11th October
to 30th November 2004
30th November Tuesday – Day+197
Last week we had a great
weekend in Wollongong, catching up with lots of friends and family.
Instead of returning home for Monday afternoon, Graham had business in
Sydney so we returned early Tuesday morning.
We drove straight through – 9 hours and got to bed at 3am and got up at
6.30 for our scheduled visit to the hospital.
Although being tired Kellie survived the trip quite well.
Her weight was up one kilo. Great
effort Kellie!! ☺.
Having the formula overnight has really helped increase Kell’s energy.
Unfortunately her tacrolimus levels were too low so we had to increase
the dose of this immunosuppressant drug and I will have to watch out for any new
side effects (nausea, vomiting, asthma, high blood pressure, loss of appetite
etc). On Friday we had to return to the hospital for a blood test to check the
tacro level. Late Friday afternoon
a phone call from the hospital confirmed that the level had gone up too fast and
we had to reduce the dose. Friday
night she threw up her tube. Saturday
she was invited to Emma’s (Kell’s best friend) 16th birthday
party so rather than going with the NGT we let her go without it over night, but
we couldn’t afford to leave it out for too long. Sunday it went back in. Today
Kellie weighed in one kilo lighter. How
annoying. Her magnesium was down
again and her creatinine levels high. High
creatinine means her kidneys are struggling.
This is usual for the dose of drugs she is on but extra fluid will help
flush the kidneys a bit. Today she does appear a little dehydrated and has had a few
headaches. She has been a little low today. Oh also did I forget to tell you?
Yes I did. This morning she had a
few watery blisters on her leg, shoulder and neck.
Swabs and slides were taken and now we are waiting for confirmation that
she has CHICKENPOX AGAIN. Apparently
while she is immunosuppressant she could just keep getting it over and over.
18th November Thursday – Day+185
On Tuesday Kellie had another visit to the hospital to have her weight and
bloods checked. The blood tests
were good, magnesium levels holding up, bone marrow aspirate good but her weight
was down another 300grams even with the NGT.
We spoke to the dietician again and we have to increase the concentration
of the feeds but not the volume. The
volume was a bit high and this left Kellie with a full feeling for most of the
day therefore she didn’t eat. Yesterday
her appetite was back and she nibbled all day.
Last night she went to dinner with her girlfriend Emma to help celebrated
her 16th birthday. Kellie
was so excited to go out and just catch up with Emma, Courtney and Rob, she had
fun but unfortunately felt quite ill by the end of the night and just got home
in time to throw up all she had eaten over the previous four hours.
She also threw up the tube, so off we went to the hospital today for an
unexpected trip and after four attempts the new tube was in place.
It was very distressing for her and myself.
After sitting on the scales she was also a little upset, another 600grams
in two and a half days. We are
hoping most of this weight loss was due to lighter clothing and a very empty
stomach. Next Tuesday we will have the official weigh-in.
Lets hope it improves. We
are driving to Wollongong this weekend to see family and friends and are looking
forward to a change of scenery.
13th November Saturday – Day+180
Well last Tuesday Kellie
had her bone marrow aspirate and 6 month immune function test.
Results of the bone marrow aspirate were very good, but we have to wait
two weeks for the function test results. The Hickman line (central catheter to
her heart for chemo, blood withdrawal and intravenous infusions) has been
removed. Kellie’s unusual fashion
accessory has gone. She is very happy. With
the warm weather coming she will now be able to swim. Kellie had been eating
well all week and we expected an increase in her weight, but this virus is a
shocker for not allowing anything to break down and be digested properly in her
system, she lost a whole kilo even with all the powder formula and an improving
appetite. We had to see the
dietician again and two hours later the nasal gastric tube (NGT) was inserted. Kellie
was quite upset. She loses one tube
and gains another. The Hickman line
was hidden under her clothing but the Nasal tube is visible to all, especially
all the gawks who can’t help but put their faces in hers and stare.
She doesn’t like to leave the house much at the moment.
Every night now I am mixing up Kellies “extra food” in a large bottle
and then attaching it to a pump and onto the tube hanging out of Kell’s nose.
It goes for about ten hours each night.
The mixture is partly broken down so Kell’s body can absorb it more
readily. It has only been four
nights and already her diarrhoea is improving and she has some more strength but
in the mornings she is quite full and has no appetite. This improves as the day goes on. Dr. Waters told us the virus will probably stay now until she
is taken off the immunosuppressant drug and her immune system is strong enough
to fight the thing. Because she had
unrelated stem cells from the cord blood she will more than likely be on the
immunosuppressants for another 3 to 6 months.
They have to keep the immune system suppressed so that her body and the
graft don’t reject one another. We
haven’t seen any Graft versus Host disease yet and we don’t want to either.
Her magnesium is holding in there but it is a little harder for her to swollen
the tablets and she needs to be reminded constantly. She is still on twelve per day.
We caught up with our dear friend Hamish last Tuesday and it was great to
have a chat and compare notes with Sandra, his mum, and Hamish. Hamish is about
42 days post transplant ahead of Kellie. Unfortunately a small rash that had
appeared on Hamish’s shoulder earlier in the day had turned a little nasty
with blisters as the day went on – yes it was his turn for chickenpox.
I think his dose looks a lot worse than Kellie’s.
I know he reads this web page so we hope all is well Hamish and you are
feeling better. Peeta has finished
her final school exams and she will have the results on 13th
December. She is hoping to study
primary teaching at uni with a major in sport.
Yesterday she passed her driving licence test with a score of 100%.
She has been out and about driving everywhere on her own already.
4th November Thursday – Day+171
What a wonderful weekend we
have had. The weather forecast for
Saturday and Sunday was supposed to be very good so we decided a change of
scenery was in order and off we went to Phillip Island for the weekend.
For once the bureau was correct and we spent two great days in the garden
and on the beach. Not quite warm
enough for me to hit the water yet but the sun and sand was great.
Kellie spent the beach time under the umbrella because her skin is now extra
sensitive to sunlight. Graham and I
spent some time trying to tame our overgrown cottage garden while Kellie lazed
around on her new portable freestanding hammock and Peeta hit the books (three
exams down and two to go in the VCE). I
was enjoying the great outdoors and the life be in it approach to the garden on
Saturday when unfortunately,” unfortunately” no that’s the wrong word,
unexpectedly it was brought to a halt by a “BL..DY BIG TIGER SNAKE!!!” A friend told us that night that he didn't think there were are
tiger snakes on the island but after checking on the web the first photo of an
Eastern Tiger Snake looked exactly like the one in our garden. Because of the rain that has fallen on Phillip Island this
year and the huge number of frogs in the creek beside our holiday house the big
TIGER thought it might take up residence in our garden and feast itself on our
frogs and mice. Graham managed on
his own for a while the next day and cleared the garden beds so there are no
hidey-holes for the venomous creatures of Phillip Island.
There are apparently only three types of snake on the island and they are
all venomous.
On Monday evening
Kellie’s energy levels seemed to improve and her appetite was coming back.
Great SHOCK. And the diarrhoea is subsiding. Wednesday saw us back at the
hospital for a review. Keith was
happy with Kellie’s lungs and decided not to go ahead with the respiratory
specialist appointment. Her
magnesium level has improved and the level was .7, up .2 from where it has been
lately. Tablets reduced to 12 per day. She has had enough energy
to tackle her history essay and exam paper after doing some research on the web.
Her humour has returned and even though it is sometimes very corny we
still laugh because it is so long since we have heard it.
She hasn’t lost any of her quick wit.
Kellie’s weight has dropped to 55kg and we had to see the dietician.
Sally has given us a few extra ideas to try and get her weight up, she
has given us one week to increase it rather than decrease or it will be time for
the nasal gastric tube. Just half a kilo will be a positive. I think they have
been a little tolerant because of the adeno virus in her bowel and they knew she
would loose weight because of this. I
think she is winning against this virus because over the last 24 hours she has
been nibbling all day. This week I
have to add Poly joule and ensure to her drinks and food. Poly joule and Ensure
are hospital strength, powder formulae that is full of fat, protein,
carbohydrate and nutrients.
25th October Monday – Day +160
Today we went to the hospital for the usual review.
Keith is pleased with everything except her asthma.
Kellie has a few crackles in her lungs and Keith would like a respiratory
specialist to look at her. We
waited around for about an hour and half but Keith couldn’t get the doctor he
wanted to see her today so he has made an appointment for next Wednesday (3rd).
I hope it isn’t too serious. Maybe
the new specialist has a better protocol for treating the asthma and clearing
her lungs. The next bone marrow
aspirate is due in the next two weeks and a new immunity test.
One good thing about the chickenpox even though it was very mild Kellie
should now have some antibodies against the virus in the future.
18th October Monday – Day+154
Here we are back at the
hospital for usual blood tests. Because
of the chickenpox Kellie has been put into a room away from the other cancer
patients. Chickenpox can be lethal
to these children. Kellie’s
weight has dropped again. It is now
57kg on the hospital scales (on Saturday at home she was only 55 naked) she must
have on heavy clothes today. The
chickenpox hasn’t got any worse, only 10 spots all together. This is good. Keith
has requested the physio help Kellie produce some lung mucus to be tested for
any bugs. Just to make sure she
isn’t carrying around something nasty besides the asthma. He didn’t seem to worried about the weight today so we
managed to get away with that one. Her
magnesium had dropped a little again. Doesn’t
surprise me because she doesn’t always take the whole days dose.
I need to ring the hospital on Thursday to make sure everything is clear
with the lung test otherwise we don’t need to return until Monday.
Kellie has the OK to go back to school on Tuesday if she has enough
energy.
Thursday - Sorry I
haven’t been able to update this website for a while but we haven’t been
able to get our internet connection working properly.
Mucus test hasn’t grown anything yet.
15th October Friday – Day+151
Yesterday we had to take Kellie to hospital unexpectedly.
She had seven watery blisters and we were a little concerned about them.
We noticed the first one on her lower back on Monday night and then a few
days later we discovered a few more. It
was confirmed yesterday that she has chickenpox.
Dr Teideman has prescribed 800mg of acycolvir four times per day.
She thinks we have caught it early enough. Kell is not itchy yet and has no temperature but she is
constantly feeling a little nauseas and extra tired. If lots more spots arrive and she is feeling very ill with a
temperature then we have to return to the hospital straight away. No more school for Kellie for a little while.
11th October Monday - Day+147
Well many great things have
happened since I last wrote in this diary.
On Friday (1st October) we didn’t have to go to the hospital
for Kellie’s magnesium infusion but her tablets were increased the previous
visit to 16 per day. Our next visit
was on Tuesday 5th and we were expecting a magnesium infusion only to
be told that Kellie’s levels had stabilised enough for her to be able to miss
it (still low but stable). Virology
tests have finally shown a virus in her bowel, a reason other than magnesium
tablets for her diarrhoea. An extra immunology test was done on Tuesday to check
Kell’s gamma globulin levels, results would be ready by Friday 8th.
Kell’s specialist has allowed her to go to school for two lessons a
week. He said it is against the
rules but he hasn’t got the heart to disappoint her by not allowing this.
If anyone in the class is coughing or sick she has to leave or wear her
mask. Friday 8th we went
to Kellie’s review check up. Great
news! Kellie’s magnesium levels have increased. (I was surprised because she
finds it hard to take all 16 tablets and is often a little slack and hasn’t
quite made it to 16 in one day yet). The results of the immunity test show that
her gamma globulin levels are now recovering.
No need for an infusion. My
theory is that the body needs gamma globulin to help absorb magnesium and
proteins and other enzymes and because her gamma globulin levels are starting to
recover her magnesium is also recovering. This
might be true but it probably isn’t, it’s just my theory.
Kellie has so much more energy now and is looking forward to a few more
hours at school. We don’t need to
go back to the hospital until Monday 18th unless Kellie appears to be
extra lethargic or has lots of muscle fatigue (low mag) or she drops her weight
below 58kg. Because of the virus
and diarrhoea she has been gradually dropping weight over the last four weeks
and now she has been threatened with a nasal gastric tube for night feeding.
She is eating nearly all day, like grazing and still sits down to 3 meals
a day but she is not maintaining her weight.
Days like today do not help, when she has eaten something that hasn’t
agreed with her and she wakes up vomiting and can’t eat anything for half of
the day. Her digestive system has
become more sensitive again (virus) and she has to be careful of what she eats
and drinks. Peeta’s 18th
birthday party went off very well. She
had a great night and received some beautiful gifts, including her car.
We had a very loud D.J. from 8pm to 1.30am and didn’t have one
complaint from the neighbours and the kids all seemed to enjoy themselves.
We didn’t get to bed until about 3am and spent Sunday very slowly
cleaning up. It’s amazing how
many empty bottle plants I didn’t realise I had growing in the garden.
The party is over now and she is back to the studying, only 17 days to go
until her first VCE exam.