Latest Updates from 2nd August 2005 to .....
21st January 2007
MERRY CHRISTMAS AND HAPPY NEW YEAR
Well it has been a little while since I last wrote in this journal. Christmas and New Year has come and gone and already we are nearing the end of January. Kellie's laptop that I have been using to do this journal decided to die. After a lot of worry that we had totally lost the web pages a wonderful computer technician was able to restore everything. So now here I go with what has happened since last November.
Kellie finished school and went to schoolies. She had a wonderful time. She has seen all of her doctors and everything is going well. She has been started on Zolodronic Acid infusions every four months for the next two years to help with the Avascular Necrosis (AVN) in her leg. After the second infusion we should see some improvement in the pain levels and discomfort. She started on the epilam for her seizures and they almost stopped the seizures. She had one large one while on medication but only after being awake all night with an ear infection. She has still been having small fuzzies, (confusion - unable to process words) but her neurologist has now changed the medication to help with this. Other than that all is good. She has been elected as President of CanTeen Victoria by her peers. Some thing she said she wanted about two years ago. She will do very well in this position and has just returned from Queensland and the CanTeen National Camp.
Kellie passed her VCE with flying colours ENTER score of 80.15 and has just had an offer from Deakin University at Geelong to study Occupational Therapy. This is about 2 hours from home and we are hoping she will get a second round offer at either LaTrobe Bundoora or Monash Peninsula which are both closer to home and she wont have to move away.
Peeta passed all of her exams with 1 high distinction, 2 distinctions, 1 credit and a pass.
We are so proud of both of our girls. Well done! ladies.
2nd November 2006
Well I said no news was good news but I am not always right!
Much has happened since I last wrote in this journal.
Kellie turned 18 on 25 July and had a wonderful party with lots of friends helping her celebrate. She got her licence to drive and her dad and I gave her a Red, Ford Laser Liata, 1996 automatic 4cyl. 5 door hatch car for her birthday. She found some great independence with her car. She has had a wonderful year at school and finished her schooling at Caulfield Grammar School on 17th October and has so far completed 4 of 6 exams for her Victoria Certificate of Education. (Equivalent of the HSC). She is aiming for an enter score of 86 to be accepted to study Occupational Therapy and Behavioural Science at LaTrobe University at Bundoora.
Up until the beginning of September everything has been going great. Kell had a sore left leg just above her knee which we put down to overuse or ligament strain from gym. She was having physio but things were gradually getting worse. Her GP sent her to an orthopaedic surgeon who in turn sent her for an MRI. The results being....5 bone infarcts in her left leg. These are areas of dead bone cells that are a direct result of the immunosuppressant drugs and the steroids given to Kellie during transplant. The largest is 5.2cm x 2.3 x 1.5cm. We have been told, with time, that the femur head (knee joint) could collapse. She is walking with a limp now and it is quite painful if she has been on her feet for a while. She is still having physio but a little different to before. I was worried that this type of thing could occur in other areas of her body but after talking to Dr. Waters he told me not to worry about it and he would see us after Kellie finished all of her exams in November and then they would organise some tests. This didn't put my mind at rest, I had been looking at the internet and read a bit about cerebral infarcts and cardio infarcts but I did the right thing and didn't worry Kellie about it so she could just concentrate on her study.
At the end of September Kellie was talking to Graham about how sometimes she has a funny spell and can't process what people are saying or she can't say a word that she is thinking about. This made alarm bells ring in my ears.
On Wednesday 4th October Kellie had been doing a practice exam at school that finished at 2.30pm. For some reason (unknown to me) I rang Kellie on her mobile at 3 o'clock. She was very vague and saying some very strange things. She was very disoriented and didn't know why she was sitting in her car in the school car park looking at papers "doing her exam". I told her to stay where she was and that I would be there soon. I immediately left work to be with her. I passed her driving along the road looking very stressed I rang her again and said get off the road immediately. She pulled over but didn't know how she got there, couldn't remember what she had done all day, nor that I had called her 15 minutes earlier. She was extremely distressed. We went straight to the GP. By the time he saw Kell she had started to remember a few things that she had done earlier in the day. He told us it was probably just an amnesia thing that he often sees in people that are stressed (exams etc). He sent us home with a referral for an MRI sometime over the next two days. When I got home I got a call from her school to say that there had been a traffic accident at school that involved Kellie's car. During the seizure she had side swiped two cars and a pedestrian standing on the road. She had no recollection of this.
At six o'clock that night Kellie had a full on generalized seizure, tonic-clonic (grand mal) lasting 2mins (fitting) and about 10 mins unconscious. The ambulance was called and Kellie ended up at the Monash Medical Centre in the emergency apartment. She had another seizure at about 10pm. Kellie had an MRI on her brain the next day and it was discovered that she has a cerebral infarct in her right temporal lobe that is causing EPILEPSY. The neurologist (Dr. Lindsay Smith) believes that at some stage during her transplant treatment she had a stroke that stopped the blood flow to this small area of her brain (can be caused by immunosuppressants and steroids used together during treatment). This scar tissue has now, over time caused an imbalance in the chemicals in her brain and bought on the epilepsy. Dr. Smith said other factors would have also bought the imbalance on eg. turning 18 and having extremely late nights partying with friends, not getting enough sleep. Kellie has been having trouble sleeping for some time and he told us this is where the imbalance doesn't let the body correct itself. The extra electro activity in the brain doesn't allow you to fall asleep even when you are exhausted and then adds to the lack of sleep problem for the brain.
Because of Kellie's exams we have not yet started her on Epilan (epilepsy medication) because of the side effects that she will have to contend with. These side effects will cause vagueness, seizures, sleepiness, disorientation, lack of concentration along with a few other things not needed while trying to do VCE exams. So far we have controlled the epilepsy with 8 - 10 hours of uninterrupted sleep every night. Kellie takes a sleeping tablet every night to help her get to sleep and wears a mask and ear plugs to help her stay asleep. Since the Grand Mal (tonic-clonic) seizure she has only had small complex partial seizures. These just give her confusion and misunderstanding that lasts for only about 30 seconds.
With regard to effecting her exams we have got all the paper work in hand and signed by doctors, teachers etc to allow her to have a derived score if she has a seizure during an exam. So far these seizures have interrupted her English and the first half of her maths exam. She had another during reading time at the start of her psychology exam but said it passed before she started actually doing the paper.
Kellie cannot drive now for 6 months (at this stage) but if she has more seizures then it will need to be two years without seizures before she will be allowed to drive again. This has been the hardest thing for Kellie, losing that independence she gained with turning 18 and getting a car.
I have added a short explanation of Epileptic seizures to help you understand what she is going through.
What the seizures look like
Partial seizures (Often called focal seizures and
previously referred to as "petit mal")
Simple Partial Seizures
These seizures are often termed an "aura" or warning by the person
experiencing them as they can precede a complex partial or tonic clonic seizure.
There is no loss of awareness or consciousness and they are usually short-lived,
less than a minute.
Examples of symptoms are:
 | Sensory – numbness, tingling or burning sensation in a
region of the body |
| Motor – jerking of a limb, twitching of the face
|
| Autonomic – blushing, pallor, increased heart-rate, nausea
|
| Psychic – deja'vu, hallucinations (visual, sound, taste or
smell), emotions such as fear |
Complex Partial Seizures
Here consciousness or awareness is altered, producing a vague, confused or
dreamlike appearance. The person may respond, but often inappropriately, and
display strange, random or repetitive behaviour. This behaviour commonly
presents as chewing, fidgeting, taking off clothes, walking around, or mumbling.
After the seizure, there is often a period of confusion and little, if any,
memory for the event.
These seizures can last from approximately 30 seconds to 3 minutes.
Generalised Tonic Clonic Seizures
(Previously referred to as "Grand Mal")
Generalised tonic-clonic seizure (sometimes called a fit or convulsion). These
are the most universally recognised seizures.
They often begin with a sudden cry, and if standing, the person will fall to the
ground, losing consciousness.
The body becomes quite stiff (tonic) shortly followed by jerking of the
muscles (clonic). Breathing is shallow or temporarily suspended causing
the lips and complexion to look grey/bluish. Saliva (sometimes also blood if the
tongue has been bitten) may come out of the mouth, and there may be loss of
bladder control.
The seizure usually lasts approximately 2 minutes and is followed by a period of
confusion, agitation or sleep. Headaches and soreness are common afterwards
The majority of people with epilepsy achieve good control through the use
of antiepileptic medication and many become seizure free. With regular
medication and a sensible lifestyle a full and active life is possible.
Now the rest of us.
Peeta has been absolutely wonderful in looking after Kellie and driving her everywhere. Both Peeta and I were with Kellie when she had her first major fit and this has affected Peeta terribly. She is so protective of Kellie and constantly rings her to make sure she is OK and checks in her room when she is sleeping, takes her anywhere she wants to go. Constantly concerned when she is out of the house and always telling her she looks pale and should have a sleep. She is the new mother hen. At the moment Kellie has two mothers. I'm sure this will wear off as Kellie and the rest of us get into our new routine. Peeta only has two exams to go and will then have completed 2 years of her university degree and diploma.
Graham is going very well and enjoying work. This week he is playing nurse. Last Thursday 26th October I had a hysterectomy and am now convalescing at home for the next 6 weeks. Graham and the girls are doing a wonderful job cooking, cleaning, shopping, washing, ironing etc, while I just watch. I'll be back on my feet before we all know it.
Kellie has her next appointments with her endocrinologist,
oncologist and neurologist on 17th November. I hope they don't have any
new surprises for us. We hope to see the orthopaedic surgeon sometime in
the new year to find out if anything can be done for Kell's leg. All these
specialists to see! Not bad for a girl that didn't even have a GP before August
2003
WE'RE BACK!!!!!!!!
6th May 2006
Hello!!!...Yes it has been a long time since I last put fingers to this keyboard. They say no news is good news, and it couldn't be further than the truth.
My only excuse for not updating this site is that I returned to full time employment in August and haven't had a lot of time to sit and think and write. It has also helped that Kellie is very well. She has been seeing Dr. Waters every 6 to eight weeks since Christmas with very good results.
She has just finished her first term in Year 12 (Higher School Certificate) with excellent results.
She is very dedicated to her school work, and studies very well for her results.
Peeta finished her first year at university with very good results - lots of high distinctions, distinctions and credits.
Graham is well and enjoying his job. He is also getting quite fit again. We are all going in fun run/walk for the Royal Children's Hospital on Sunday. Graham will run 14 km and the girls and I will walk 4.5 km. Kellie and Peeta have joined the gym and are now enjoying getting fit. I am trying to get fit also but find it hard to fit it in with work, washing, ironing, housework, shopping and mothering. I am not complaining, I enjoy working but really I haven't worked in an office full time for more than 19 years and my time management skills are still trying to come back to me.
Kellie has enjoyed a few trips/camps with CanTeen and Camp Quality. So far this year, she has been to Adelaide (Victor Harbour), Tasmania, and the Commonwealth Games. She is now a committee member of CanTeen and helps with activities and decision making within the organisation.
Graham and I have just returned from a 10 day holiday/cruise in Singapore, Koh Samui, Bangkok, Kuan Tan. It was most enjoyable.. and the girls survived with out us. The house was still standing when we got home and both girls were well fed and happy. Peeta is a good cook.
Kellie has been learning to drive and will be able to try for her drivers licence in July. (she needs all the practice she can get).
Kellie has had all of her immunisation needles just like a new born baby. Dr Waters gave her an immune function test last visit and unfortunately one of the shots hasn't produced any antibodies so she will have to go through that lot again. (I can't remember wish needle it was ...possibly measles...she hasn't had the rubella injection yet...apparently it is too early).
The only after effects from the transplant seem to be occasional skin irritations that look a little like eczema but don't itch. (Lots of moisturiser helps.) Also, Kellies ovaries don't produce any hormones so she is on hormone replacement daily, she has her next appointment with the endocrinologist in May for a follow up and ultrasound scan of her thyroid to make sure it is still OK after the radiation.
28th August 2005
TWO YEARS SINCE DIAGNOSIS
My goodness has it been that long? Today we went out to lunch for Yum Cha. Kellie wanted to celebrate being healthy 2 years after that horrible day when we were told what was making Kellie's arms and legs ache. At the time we had no idea what to expect for the next few years. Now after lots of hard times, here we are with a very happy child, sorry... young woman. After looking at her latest photos and thinking about what she has achieved lately it is too hard to believe what she has gone through.
We had our monthly visit to Dr Waters last week. He shed a little more light on the glandular fever diagnosis. The blood count was inconclusive to say she actually had active glandular fever at the time of the blood test, but she has had it sometime since transplant because the antibodies for Epstein Bar Syndrome (GF) are in her blood. The sore throat, swollen glands and slight temperature was more likely a 24 hour virus aggravated by the immunisation injections. She certainly had plenty of bad times and bouts of lethargy over the last year that could have easily been G.F.
I asked Dr Waters if Kellie's prognosis has now improved with the transplant being so far successful...his answer..."with every day and month that passes, with good blood results and no relapses her prognosis is improved. We don't know why some people relapse and when it will happen. We just have to hope it doesn't happen to Kell". He did not make me feel very much at ease but he is right we still have this horrible bomb lying there dormant in our life. No matter how much we want to forget about it, and push it to the back of our minds, it is still there and we must always be prepared and looking out for it. We just hope the fuse on that bomb burns out and never explodes again. We live everyday with hope, love, laughter and enjoyment and never dwell on the unimportant things in life. Life is worth living and enjoying. You just don't know what is around the corner.
Kellie's philosophy "Never let a chance go by to experience something new". Kellie is already making plans for a parachute jump at Christmas time...(I think all those drugs have sent her nuts)...Her silly father told her he would do it with her. Once again Peeta and I will just watch.
20th August 2005
Last Friday (12th) Kellie had her Year 11 School Formal. After her hair was done and her make-up finished and she put on the beautiful gown off she went to her formal. She looked absolutely beautiful. But I'm not bias. (ha ha). She had a wonderful time and felt very normal. No sign of lethargy, nausea, aches and pains, just euphoria. Look at the pictures and you too will see how much she was glowing. Graham, Peeta and I cannot believe how happy Kellie is. She is constantly smiling, singing, cracking jokes and annoying everyone with her energy and vitality. It is hard to believe that on the 28th of August it will be two years since she was diagnosed. She has come so far. Her netball team played in the grand final today and missed out on the winners trophy, just like two years ago. The 28th will be another anxious day for us. Kellie goes to see Dr Waters on Tuesday for her monthly review and more immunisation needles. All fingers are crossed for a good result.
2nd August 2005
Well they say no news is good news. I am so sorry for being the missing writer of this diary. But now I am back.
Over the last month or so many things have happened. To start…Kellie had a visit with Dr Waters on the 28th June and started her immunisation – three needles in her arm. She also had a pulmonary function test and an echocardiogram to check for lung damage and cardiomyopathy as a result of the treatment. These tests were compared with the pre-transplant base tests and everything was fine. Her heart has suffered no ill effects from the Chemo and radiation (yahoo!!!) Her lungs were a little weaker but we hope this will improve with some fitness. Another comparison test will be done in about 12 months.
On 3rd July, Kellie went to Kakadu with CanTeen and had a wonderful time. She saw lots of crocodiles, a very large snake, ate water lilies and drank through the stem, saw many sunrises and sunsets across the beautiful outback terrain, made many wonderful friends, giggled, played, ate, and had lots and lots of fun. She didn’t get sunburnt and didn’t have one mosquito bite (she is very proud of this accomplishment) and she did bring back a didgeridoo (sorry to our aboriginal friends for my spelling). Another thing she bought back home was a very tired body. Good thing she still had another week of school holidays so she could recover before heading back to school. She arrived home on the Friday night around 11.30pm and Graham and I flew out at 7am the next morning for a reunion weekend with wonderful friends from Wollongong. It is the first time, for a long time, we have been away without one of the girls in tow. We had a great time in country NSW (Bowral) with some friends that we have known for more than 30 years. (It was a reunion for Graham’s under 18’s football team). It is amazing how much you can laugh at yourself and what you did so many years ago. My cheeks were aching for days after.
It is the 25th July HAPPY 17TH BIRTHDAY KELLIE!!!!!! Oh my goodness, where have the years gone!!! She had a wonderful day and received the presents she wished for. (An itrip for her Apple ipod, a “Betty Boop” figurine, pyjamas, Rocky Horror Picture Show DVD, clothes, money, and vouchers, plus the promise of a fancy dress party on Saturday 31st.)
26th July she had to see Dr Waters for her monthly check up again. She was very, very tired and had been carrying around a sniffle and cough with a sore throat for a few weeks. Her blood tests were all OK. I must admit I was worried because she didn’t seem her happy self and I was positive something was going to be low, like her iron, magnesium or just something. But Dr Waters said all was OK and he sent her for the next lot of immunisation needles – 4 this time. On Wednesday morning Kellie woke up with an extremely swollen throat. Her glands in her neck were enormous. She could hardly swallow and she had a moderate temperature. Off we trotted to the GP thinking a throat infection was the go or a reaction to the immunisation needles. She was started on Penicillin in case it was bacterial. Dr Taft wanted to have blood tests performed to rule out a few things. Because she had had a test the day before the same blood was tested for ……wait for it …..glandular fever. Ta Dah!!!! Friday night it was confirmed…..Kellie had Glandular fever. Oh no!!! the party was to be Saturday night, we told her she had to cancel the party otherwise it would take much longer to get over the fever and perhaps she would need a hospital stay…..Kell was not going to cancel. Well I don’t know what miracle she pulled overnight but she woke up feeling great. The swelling had gone, no temperature, no tiredness. The party went ahead. She looked absolutely gorgeous as Betty Boop. She shared her birthday celebrations with a mafia boss, a Jedi knight, a cowboy, AFL football players, an airline pilot, Bananas in Pyjamas – B1 and B2, Guy Sebastian - Aussie idol, fairies, ballet dancer, a Princess, Cinderella, Prince Charming, Cat Woman, Pippy Long Stocking, Hula Dancer, pyjama girl, a transvestite, a pirate and a Mexican. Peeta also had a few friends over to help celebrate, they got dressed up as 18/19 year olds going out night clubbing (which they did at about 10.30pm and returned home about 2.30am – early night!!!). On Sunday, still no symptoms of the dreaded Glandular Fever. After speaking to the GP yesterday, she told me that Kell must have only got a mild case. Apparently, three out of ten people have had it but only mild and have no idea when they had it because symptoms are so mild. Another 3 out of 10 have it bad and are sick for weeks with jaundice, lethargy and swollen glands. She went to school the last two days but is a bit tired and retired to bed at 8.30. I was very worried when told it was GF but now I am relieved to know that her body has coped with it very well which means her system is working better than I thought. Back to RCH on 28th August for her next monthly check up and 6 immunisation needles.
