17th August to 28th
September 2004
28th September Tuesday-Day+134
Well haven’t I been slack. Sorry
I haven’t updated this sight for two weeks.
The news is that Kellie is doing very well except for the asthma that she
now gets from the tacrolimus (immunosuppressant drug).
She is trying to keep it under control with Ventolin every 4 hours.
The results of the immunity tests show that Kellie’s lymphocyte lines
are growing fine and are a little ahead of what is expected at this stage but
her gamma globulin (the antibody-carrying globulin) is below or behind where it
should be at this stage. Another test will be conducted in two weeks time and if there
is no improvement Kell will be given an infusion of gamma globulin for a boost. I
have been reading and the lymphocyte levels could be elevated because of
Kellie's asthma. Because her immune system cannot fight viruses,
Keith still advises us not go to movie theatres or large shopping centres
as this is where many viruses are spread due to the air conditioning.
But he is looking to allow Kell to return to school next term for a few
hours a week depending on her energy levels.
Today is a low energy day, she looks completely worn out but hasn’t
done anything to warrant this, very normal for transplant patients.
Nothing has changed with the magnesium still two infusions a week and
twelve tablets a day. The tablets
don’t seem to be doing anything except help maintain the diarrhoea.
It may sound very strange but both Kell and I are surprised that we both
look forward to and some how enjoy visiting the hospital now.
We get to catch up with the other patients and their families. Most bone
marrow transplant families visit the hospital on Tuesdays, whether it be weekly,
monthly, 3 monthly etc., and it is amazing to watch their progress and compare
it with Kellie. We have made some nice friends that are all in the same boat we
all relate to each other in a very different and unusual way.
We share laughs, compare medication, treatment outcomes, side effects,
emotions, grumbles and gripes and when one child is unwell and we don’t see
them for a while we all hold our breath until we know everything is all OK. What a strange new bond we have.
There are people from all walks of life. One family I have befriended are refugees from (?)Tanzania
(she calls it Zoolooland). Mum left
her hometown 4 years ago with four (? Maybe 5) children in tow leaving Dad
behind. After spending time in
refugee camps in various parts of Europe she was allowed to come to Australia in
July last year (she has two brothers here already).
She was here for 48 hours when her daughter was diagnosed with a life
threatening blood disorder. Dad has
been reunited with his family since late June this year.
I became friends with mum when I noticed none of
the other parents would speak to her thinking she couldn’t speak English and
I’m sure because she wore the full headgear and robes.
I felt extremely sad for her because she had no support from the other
parents like I had had. She could
speak broken English and has a wonderful heart of gold. She welcomed me as a
friend. We now ask about each other and our children and share that strange
unusual bond. Unfortunately her young daughter will not win her battle against cancer and is
currently in palliative care.
To
change the subject, Peeta is in the throes of VCE(HSC) study, all formals are
over and the extra hard work begins. It
only seems like yesterday that she started Kindergarten at Nareena Hills Primary
School. We are now also gearing up
for her 18th birthday on 9th October.
She will finally be able to go for her licence to drive. If we still lived in NSW she would have been driving for a
year by now and I would no longer be taxi driver.
She has just received confirmation of part time employment with Myers.
Maybe this will help the purse strings.
14th September Tuesday-Day+119
Yes she did last the
distance and surprised us all. We
had an absolutely lovely day and night. Kellie
looked absolutely beautiful. She
had a great time. When she was
presented and the MC read out her greatest achievements-“Surviving leukaemia
and a bone marrow transplant and making it here tonight.” I couldn’t stop
crying, and there wasn’t a dry eye in the ballroom.
This was an amazing achievement. Just
three weeks ago she was still being wheeled around in a wheelchair. Saturday was
one of the coldest September days in Melbourne’s history.
We had lots of rain and hail. It even snowed on Mt Dandenong (the hills
near our home.) Photo’s that were to be taken in my lovely garden were taken
in our lounge room in front of the open fire.
We had about thirty family and friends who watched Kellie and her partner
Cameron and Kellie’s girlfriend Emma and her partner Andrew having photos
taken. I have included some photos
on the photo page that Peeta took. I
think they look pretty good, I can’t imaging how good the professional ones
will look. I hope it doesn’t take
too long to download on your computer, please be patient.
Today we are having our usual review with the specialist.
Kellie needs her infusion of magnesium.
She is very, very tired but she said what is good about it is that the
tiredness is from a very late Saturday night (2am to bed) and the fun of the Deb
and not from being sick. She has amazed us all with her achievements and Graham, Peeta
and I are extremely proud.
10th September Friday-Day+115
Today Kellie’s magnesium
level was too low so it is now time to go back to twelve tablets a day.
(More diarrhoea) We told Keith that Kellie was doing her deb tomorrow and he
was all smiles – he didn’t object – he just said “Make sure I get to see
lots of pictures”. Kellie asked
when she could stop wearing her mask and he said “how about today?” She had a smile from ear to ear and without the mask everyone
could actually see it. Tomorrow is
THE day and last night Aunty Sue, Uncle Ralph, Aunty Sheree, Uncle Brian,
Nicole, Alyse and Blake arrived at 12.30am.
We didn’t get to bed until 2 o’clock with all the excitement.
Grandma and Grandad arrive today at 3 o’clock.
We have had to hire a minibus to transport everyone around.
Kellie is feeling very well and we are hoping this will last all day
tomorrow. Make-up is scheduled for
11.30am, photographer arrives at 1pm and limo at 2pm, arrive at venue 3pm,
studio photos, video and dance rehearsal between 3 and 7 pm and then the night
begins and is expected to finish at 12.30 followed by a one hour drive home.
Will Kellie last the distance? Will
I make the distance?
7th September Tuesday-Day+112
Here we are again in
outpatients. It’s been two weeks
since I have written in this diary and a few things have happened. Kellie’s
energy levels are hard to predict – one day good the next day bad.
Life is a bit of a roller coaster ride for Kellie at the moment. Last
Tuesday Kellie had her bone marrow aspirate to check the progress of the graft.
Results – excellent. Unfortunately the immune function test was not
performed by the pathology lab and she had to have extra blood taken today to
test her immune system. Results will take 2 weeks to come back. On Wednesday we had a trip to emergency.
Kellie had awoken at 3.30am with a very bad pain in her chest.
Thinking it was probably indigestion she took some Mylanta antacid. At 6.30 there was no improvement and she finally woke me up.
Kellie hadn’t eaten the night before and we found it hard to believe
the pain could be related to indigestion. We
thought food may correct the problem. At
nine o’clock the pain got worse and she had pains now running down her arms.
Please not a heart attack!! I rang
the hospital and it was off to emergency we went.
After an ECG, an x-ray, blood cultures and a dose of painkillers
everything just seemed to improve and we were allowed to return home.
Keith said just another mystery ailment for Kellie.
Kellie is having twice weekly magnesium infusions and her oral magnesium
has been reduced to 6 per day. Her
levels are staying just in the normal range with this and the diarrhoea is
lessening. The magnesium was causing the diarrhoea, with the diarrhoea
not even the magnesium was metabolising properly so her levels were struggling
to stay normal. What a viscous
circle.
We have had two very good
days in a row. Energy levels
higher, shakes easing off, appetite improving and diarrhoea easing off.
This is good because Kellie is getting all excited about the “Deb”
Ball on Saturday. Everything is
ready to go. I promise to add photos to these pages.
24th August Tuesday-Day+98
After a weekend of lots of
shaking, spewing and generally feeling unwell along with anxiety attacks by me,
we today went on our usual excursion to the Royal Children’s Hospital.
We arrived early so that the blood test results would be ready by the
time we saw Dr Waters. He saw the results before he saw us, and Kellie was
immediately given a magnesium transfusion.
She was a naughty girl yesterday and refused to take her Milk of Magnesia
because of the laxative effect it has. Basically, she was sick of all the crap.
Today the levels were way too low hence the infusion.
Dr Waters has now changed the magnesium from “milk” to tablets,
twelve tablets to be taken over 12 hours – one each hour or 2 every two - to
try and reduce the unwanted effect on her body.
Kellie needs the magnesium. If
the tablets don’t reduce the diarrhoea we may have to go to the hospital twice
a week for infusions which take 3-4 hours to receive. If her levels on Friday
are still low she will have another infusion. Because of the severe diarrhoea
the cyclosporin was not metabolising correctly in Kellie’s system and
therefore building up causing the reaction.
Cyclosporin levels have been under the 250 mark since Friday and the
horrible tremors, vomiting and nausea side effects have not gone away.
Keith has stopped the cyclosporin and replaced it with another
immunosuppressant drug called tacrolimus. Tacrolimus has a list as long as your
arm of side effects but we have never seen the list associated with cyclosporin
so we don’t know if it is longer or not.
Three other drugs have been dropped, no amphetericin fungal spray up the
nose (Kellie jumps for joy), no fluconozole and no folic acid.
Kell’s blood levels are improving again and Keith believes the bone
marrow is functioning well. Next Tuesday she will have her 100 day aspirate to
test her immune system and prove that the marrow is good.
Tonight Kellie is feeling quite well and surprised us by eating her
dinner. It was nice to see her
smile coming back. (P.S. Dinner
also stayed down which is another good sign.)
20th August Friday-Day+94
Well it is now Friday 20th and we have just returned home.
Yesterday was a bit of an annoying day.
Bloods were taken at 6 in the morning for testing.
At 11.30 the Registrar was wondering why the cyclosporin results had not
been posted on the computer. After
a lot of investigation it was discovered that the lab did not test for
cyclosporin. Isn’t that why we were having blood tests and were still in
the hospital? The lab originally said it wasn’t requested on the blood card
and when the doctors insisted it was and that was the main reason for the test
they then changed their mind and said that not enough blood was collected for
this test. Whatever!!
Kellie hadn’t had a temperature since Tuesday and her medication had
been reduced from 90mg twice a day to 60mg twice a day and the cyclosporin
levels were dropping slowly. The 7pm blood test confirmed her levels were at a
much safer position (between 200 and 250).
No bugs had grown in her blood cultures and no bugs had grown in the poo
sample. So she didn’t have an
infection, just cyclosporin poisoning. We
insisted on Kellie being allowed home today given these circumstances and the
fact we needed to get away from the Brats before we both exploded and said
something to the mums and brats that we might regret.
After this morning’s blood test the levels were still dropping closer
to the 200 mark. Yes she could go
home. Gancyclovir infusions have
also been axed. We have an
appointment with the specialist on Tuesday and he will review Kellie. Times will be set for the 100day post transplant bone marrow
aspirate. This will determine if
the immune system is improving. It
is not expected to have recovered, but just showing signs of growth.
Due to the cyclosporin overdose her blood counts have dropped a bit and
we are back below the normal range for haemoglobin, white blood cells and
neutrophils. Kellie is a little anaemic and they will decide on Tuesday if
she needs a bag of blood. Neutrophils
are down to 2 so we need to be extra strict again on outdoor excursions,
visitors, diet and hygiene.
19th August Thursday-Day+93
It is now Thursday and we are still in the hospital.
Doctors are still trying to regulate the cyclsporin levels. Kellie appears more ill than ever before.
She is pale nauseas and extremely shaky (full body tremors).
She is still off food and the diarrhoea has not subsided.
It hurts to talk because of the tremors so we don’t get many words from
her. She no longer has a
temperature. She is extremely
miserable. Her blood cultures have not grown any bugs but we have not yet got
results from the poo sample. Kell’s neutrophils and white blood cells have
dropped. This is an indication that
her body has been trying to fight something.
We are in the bat cave with two four year olds that are spoilt rotten. I think
we are in the “Brat Cave”. We
have been in many shared rooms but this would have to be the worst. They scream
at everyone that comes near them, they have their mothers and nurses scared of
them, they stay up extremely late for 4y.o.s (11pm) and wake up at 6-6.30am and
sometimes through the night and don’t sleep at all through the day. They are
both very over tired and they just scream to get everything that they want.
Their parents obviously keep forgetting that they are in a shared room with only
fine cotton curtains dividing them. I
now know about one 24 year olds total sex life, partner dramas, money problems
and disgusting swearing problem, and I don’t even know her name. This is all because she talks very loud on the mobile phone
between 11.30 and midnight. This is
all very annoying for Kellie who is still quite lethargic and needs to sleep.
On Tuesday night she finally dosed off at approximately 3.30am after one
of the children finished having an hour tantrum for Nutri-grain at 2.30 in the
morning. Kellie tried to catch a
few Zs through the day but every time it looked like she was falling asleep the
little brat opposite us would yell out and pretend he was just singing or start
foraging in his lego box very loudly. Last
night things got a little better. The
head nurse on duty, Shirl, had heard my and the duty nurses complaints, and
turned up in our room at 9.30 and told parents and children it was time for all
patients to be asleep and the lights were being turned out – no compromises.
I think all children and parents got a great shock.
Plus all mobile phones had to be turned off whilst on the ward.
(This is a hospital rule, but the Brat parents still complained and said
it was unfair). Kellie wore
earplugs and had a sleeping tablet last night so she was able to have a good
nights sleep and so did I. This, I
hope will put us both in a good mood today so that we can tolerate the brats. Lets hope they get these levels sorted out today.
17th August Tuesday-Day+91
Wake up call!!! Kellie
is back in hospital. For the last
three days Kellie has been feeling quite unwell.
She has had severe tremors in the hands, arms, legs and body.
She has also been nauseas and vomited a few times, and diarrhoea is a
major problem. We rang the hospital
yesterday unsure what to do and we were advised to get there quickly.
Apparently her cyclosporin level was 300 (should be around 200) so we had
a typical case of cyclosporin poisoning. This drug was stopped overnight with
the hope of improvement. We had to return to the hospital this morning with a
poo sample for testing and more routine blood tests.
While we were waiting to see the doctor Kellie developed a temperature.
Extra blood cultures have now been taken and she has been started on intravenous
antibiotics and fluids. She has
been admitted to 6 East bat cave. Dr
Keith Waters said it is for the best but will try to keep her stay as minimal as
possible. He feels that maybe now
we can get to the bottom (no pun intended) of the diarrhoea.
All tests and precautions are being taken in case she has something more
sinister than the cyclosporin reaction. I
checked the internet for possible side effects from overdosing of cyclosporin
and everything except the diarrhoea is typical. Magnesium can also work as a laxative and because she is on
so much orally each day this could be causing the diarrhoea.
While she is on the ward they will give her magnesium infusions so if the
diarrhoea is from oral magnesium it should subside.
We hope so. All routine
blood tests show levels are within the normal range.
