24 December 2010

T+465

 Happy Christmas to you and your family!

May your Christmas be filled with Joy, Hope and Peace
as you celebrate the birth of Jesus Christ, the Saviour of the world!

15 December 2010

T+456 or 15 months!

Jeremy had an uneventful visit to hospital clinic this morning - uneventful, because the results from last week's bone marrow aspirate were not back yet ...

He made it to school just after morning tea for his LAST DAY OF KINDY!  He had an exciting day which ended in the whole school making a guard of honour in the playground for the Year 6 students.

Then late this afternoon, the bone marrow transplant doctor rang with the fantastic news - Jeremy's results are MRD Negative!  PRAISE GOD!!!!!

8 December 2010

T+449

Jeremy's bone marrow aspirate went well today, although he was once again made to wait until the end of the general anaesthetic list because of his ESBL status.  Apparently it depends on the anaethetist of the day as to whether this is an issue or not.  However, he was still allowed to be in the playroom with the other oncology children, so he had a happy time playing with the cooking toys and cars - and this took his mind off his hungry tummy!.

We will hopefully know the results next Wednesday when we go back to hospital clinic to see the bone marrow transplant doctor.  Thanks to all who have been praying about this for Jeremy.

1 December 2010

T+442

Winter showers for the first day of summer! Jeremy's kindy class was supposed to go on a bushwalk today, but instead the local council bushcare officers came and gave them a talk in the school hall.

One more week until Jeremy's next bone marrow aspirate on 8 December 2010 - we are praying that it will be MRD Negative this time.

And two more weeks until the last day of kindy - praise God that Jeremy has had such a wonderful first year at school!

28 November 2010

T+439

Jeremy was busy at Sunday School today!

27 November 2010

T+438

 

Thanks to Camp Quality, we were fortunate to be invited to the Johnson & Johnson Christmas Party at Rosehill Gardens.  Stephanie and Jeremy had a ball having their faces painted and hair sprayed, and going on lots of fun rides!  Jeremy's favourite rides were the Freefall ride, the Gravitron and the dodgem cars.

17 November 2010

T+428

This morning Jeremy went to the Australian Hearing Services for his follow-up appointment. The audiologist was able to re-fit his hearing aids properly, so that they are no longer whistling all the time. Jeremy was pleased when she gave him a little blue backpack with a soft toy caterpillar (who has hearing aids too!).

Then he made it back to school in time to receive this award at the Infants Assembly!

16 November 2010

T+427 or 61 weeks

Yesterday at school, Jeremy was knocked over by a big boy in the playground and now he is missing lots of skin from his elbow! His little Kindy friends found Stephanie, and she took him to sickbay and looked after him there.

This morning his wound was full of pus, so he went to see the doctor - who changed his antibiotics to a stronger (pink!) one which covers both his ear infection and any possible infection that may result from his wound.

Thinking back a year ago, we are thankful that he now has platelets!

12 November 2010

T+423

Jeremy was happy to spend yesterday and today at home recovering.  He was still feverish yesterday, but thankfully he has had no more fevers today.

10 November 2010

T+421

Jeremy spiked more fevers last night, this afternoon and tonight. He was happy to play at home, and he wanted to walk up the hill to pick up Stephanie from school, even though he was still febrile.

He is slowly getting used to wearing his hearing aids (which have nothing to do with him having an ear infection), and he managed to wear them all day today. It is good that he told us that he can hear better with them!

9 November 2010

T+420 or 60 weeks

Jeremy woke us up in the middle of the night saying that his ear hurt. He didn't have a fever, but was given Panadol anyway for the pain.

This morning he told us that his ear still hurt, so he took some more Panadol and went to school as he was otherwise happy and bouncy.

He was sent to sickbay after lunch, because he said his ear and throat hurt, his eyes were watery, and he generally looked sick. He had a fever of 38.6, so was given more Panadol.

We are thankful that Dr KonKon came over to look at him. He told us that Jeremy has (another) ear infection and started him on antibiotics.

8 November 2010

T+419

A year ago today, Jeremy was finally discharged from hospital after his transplant, having been there for 84 days in a row!

Today, Jeremy was pleased to get his new hearing aids.

3 November 2010

T+414

This morning Jeremy went to hospital clinic to see the bone marrow transplant doctor. He told us the results of the rest of Jeremy's 12-month bloods (which were taken from him when he was having his general anaesthetic in October). His vitamin D is low, so he will need to take some vitamin supplements. His iron levels are very high, but this is in keeping with the huge number of blood transfusions that he has had and should eventually come back down to normal in a few years' time. Apart from these issues, his 12-month blood results were good.

Jeremy will have his next bone marrow aspirate on Wednesday 8 December 2010 - and hopefully the results will be MRD Negative this time.

Afterwards, Jeremy went to see the hospital dentist for his one-year post-transplant checkup, and we are thankful that his teeth are OK.

2 November 2010

T+413 or 59 weeks

The Australian Red Cross blood bank is desperately short of blood, so if you can, please visit your local collection centre and give blood! Click here for more information. Thanks!

28 October 2010

T+408

Jeremy was very excited to go to his first Stewart House Fete at school today! Stewart House cares for children from NSW and ACT in need, and every year our school holds a fete to raise money for the work of Stewart House.

Jeremy had his face painted to look like Spiderman, then happily went shopping at the White Elephant Store - and came home very pleased with all the toys that he had bought!

21 October 2010

T+401

The bone marrow transplant doctor rang this afternoon with Jeremy's bone marrow aspirate results from last week. He told us that his results are inconclusive - they are not definitely MRD Negative (ie. no detectable leukemia cells), but they are also not definitely MRD Positive (ie. leukaemia cells have been detected). Jeremy's previous results have all been MRD Negative.

MRD or Minimal Residual Disease testing is at a highly sensitive molecular biology level (we are talking about looking for DNA markers) but there are limits to that sensitivity. Jeremy's results this time are at the "fuzzy grey area" at the limit of that sensitivity.

What this all means is that -

- thankfully, he has not relapsed and the leukaemia has not come back

- his blood counts are normal and he is clinically well

- he will have another bone marrow aspirate in 2 months' time, instead of 3 months' time

The doctor also told us that he is not worried, and that he has seen this happen before. Sometimes a patient's MRD is inconclusive for a few bone marrow aspirates, and then MRD Negative again after that.

Thank you to all who have been praying for Jeremy. Please pray that the results of his next bone marrow aspirate will be MRD Negative.

18 October 2010

T+398

This afternoon Jeremy went to the Australian Hearing services for assessment. He had another hearing test, which again showed that he has high frequency hearing loss. Examples of high frequency sounds are birds chirping, triangles playing and consonant sounds such as "s", "f" and "th" (vowels can be heard normally).

The audiologist recommended that he use hearing aids, because even though he can hear people speaking, he cannot make out what they are saying. This is especially important in the classroom, so that he can both hear and understand when his teacher talks.

Last week, when we explained to Jeremy about his hearing loss and that he would need hearing aids, he surprised us by saying "I want to go and get my hearing aids NOW!". We are thankful that he is so positive and enthusiastic about this new development - unfortunately, it will take a few weeks before his hearing aids will be ready.

17 October 2010

T+397

After church this morning, the children were very excited to go to the Teddy Bears' Picnic at Rosehill Gardens. Thanks to Camp Quality, we had been given a family ticket to attend this annual fundraising event for the Children's Hospital at Westmead.

Stephanie and Jeremy had fun on the jumping castle, dancing with the LazyTown characters, making a hoola hoop, having their faces painted and taking their teddy bears to the Bear Clinic. But the highlight was a ride in a mini firetruck, which drove around an empty carpark with its siren blaring - and squirting water out at the bystanders!

13 October 2010

T+393

Thankfully Jeremy had no more fevers, and was able to have his bone marrow aspirate today!

We had a pleasant surprise when we went to hospital clinic. Instead of having to wait until the end of the general anaesthetic list as per usual (because he had ESBL), Jeremy had his procedure soon after we arrived at 10am! The head nurse had decided that as Jeremy was not incontinent etc, he did not pose an infection risk to the other oncology patients and could have his turn according to his age (which is how the list is usually arranged).

Jeremy was excited about this on 2 counts - one was that he could eat breakfast earlier (rather than having to starve until lunchtime), and the other was that he was allowed to watch DVDs on the big TV inside oncology clinic (when usually we are made to wait outside clinic or kept in isolation after his bone marrow aspirates).

While he was having his special medical sleep, the nurse also took a large amount of blood for the rest of his "12 month bloods". The bone marrow transplant doctor had kindly organised this to save him the trauma of having lots of tubes of blood taken while awake!

Although we had finished at clinic much earlier than expected, we still had to wait around until 2.15pm to see the ENT doctor. Jeremy enjoyed lunch at the Bear Bite cafe and then played at the hospital playground.

It wasn't until 2.55pm when we actually saw the ENT doctor, who cleaned out the wax in Jeremy's ears. However, he was not worried about the gunk in his middle ear - he was more concerned with Jeremy's high frequency hearing loss and referred him to the Australian Hearing services for follow-up.

12 October 2010

T+392 or 56 weeks!

At 12.15am, Jeremy spiked a fever! He spiked another one at breakfast, and again before it was time to pick up Stephanie from school! But he still wanted to walk up the hill to "go get JeJe"! Hopefully, these fevers are just a side-effect from his immunisations yesterday and nothing more ...

Tonight Jeremy wanted to have a middle-of-the-night party, because he knew he would be fasting until after his bone marrow aspirate tomorrow. He was very groggy when we woke him up, and only wanted to eat chippies!

11 October 2010

T+391

This morning before he went back to school for the start of Term 4 of Kindy, Jeremy went to the doctor for 2 needles - Pneumovax 23 and Meningitec. Apart from having sore upper arms, he seemed otherwise happy to play with his friends at school.

10 October 2010

T+390

Thanks to Make-A-Wish, we have just returned from a wonderful week at the Gold Coast. We were very thankful to see Stephanie and Jeremy having so much fun together at Dreamworld, at Seaworld, at the beach and at the pool - especially when we remember how sick Jeremy was this time last year. It was also lovely to have everything arranged for us, so that we could enjoy a special family holiday together.

1 October 2010

T+381

October already! This year is flying past!

Next big event on the medical agenda is a bone marrow aspirate on 13 October 2010 - please pray that the results are all clear!

30 September 2010

T+380

A day at home resting and recovering!

29 September 2010

T+379

We all seem to have caught Jeremy's bug - with coughing all around (but no fevers!).

28 September 2010

T+378 or 54 weeks!

Update on the "slumber party" last night - after some chatting and laughing, the children were asleep by the time the adults went to bed. It was nice to hear their sleep noises as we too drifted off to sleep.

Jeremy woke up in the middle of the night and wanted to go back to his own bed in his own room. This was quickly arranged, and he was happy to go back to sleep by himself.

However, around 4.30am a very cross little boy stormed into our bedroom demanding to know why Mummy had put him to sleep in his own room when he was supposed to be in our room!!!!

By then, Stephanie was fully awake ... so that was the end of our sleep for the night!

27 September 2010

T+377

For the first day of school holidays, we're going to have a "slumber party" in our bedroom - and hopefully, all four of us will actually get some sleep!

26 September 2010

T+376

A happy day going to church and then playing at PawPaw KonKon's place!

25 September 2010

T+375

We are thankful that Jeremy had no fever today,

and that he had so much fun at his one year celebration party!

24 September 2010

T+374

Jeremy spiked a fever at 9.15pm last night! This morning he had slightly elevated temperatures (although no fever), so he went to school for the last day of Term 3 until morning tea time. After lunch, he went to see the doctor - but by then his temperature had gone back to normal, and the doctor could find no reason for his fever. He went to bed tonight with his temperatures slightly up again ...

23 September 2010

T+373

Meet Ruby-Sue who went to school as Jeremy's News item today!

22 September 2010

T+372

Praise God for a whole day at kindy!

And praise God that Jeremy could hear and identify which songs we were whistling when we played "Guess the Tune" tonight!

21 September 2010

T+371 or 53 weeks

For us, today was a day tinged with sadness. This morning Jeremy went to hospital for a spine X-ray to check the health of his bones, and a hearing checkup. Although it will be some time before we know the results of his X-ray, unfortunately our suspicions that Jeremy has some hearing loss have now been confirmed.

When he was tested in August last year, his hearing was "perfect". Now he has high frequency hearing loss, which means that he cannot hear high-pitched sounds. Thankfully, his low and middle frequency hearing is normal and also he does not need to have a hearing aid. The bone marrow transplant follow-up nurse told us that it is common for the antibiotic Gentamicin and TBI to cause hearing loss, but that it should have arrested and will not become any worse. However, he needed Gentamicin to fight the severe Gram Negative infections that he had pre/post/during transplant. He will have another hearing checkup in 4 months' time.

While we are sad about this, we are still so thrilled that our little boy is in remission and is running around very happy and active. Putting things into perspective, this is just a minor side-effect of all the toxic treatment that he has been through - and thanks to God, he actually made it through!

20 September 2010

T+370

At school today, Jeremy found out that he won a prize at the Moon Festival Lucky Draw last Thursday night! Apparently it is a backpack, scarf and beanie, which we will pick up tomorrow morning at lines.

19 September 2010

T+369

This morning we visited our local church, and were glad that Stephanie and Jeremy were happy to join in their Sunday School.

18 September 2010

T+368

Today we went out for lunch at a "new" restaurant where, after some initial protesting that it wasn't where he wanted to go, Jeremy discovered that he likes sweet and sour pork ribs - and very much so!

17 September 2010

T+367

Thanks to the Ronald McDonald Learning Program which provides educational assistance for children who are recovering from a serious illness, Jeremy has been able to attend tutoring sessions in the mornings before school with another oncology survivor from his kindy class. His first session was on Wednesday (on his one year anniversary!), and his kindy teacher helps them with their reading and writing etc.

16 September 2010

T+366

Jeremy went back to school yesterday, and was happy to see Stephanie perform in the Year 2 Korean Dance at assembly. Their performance was a "dress rehearsal" for tonight's big Moon Festival celebration at school.

After an early dinner, Stephanie and Jeremy were very excited to dress up in their Chinese outfits and walk to school in the dark with their glowsticks and lanterns. It was spectacular to watch the Chinese Lion Dance on an outdoor stage on the astroturf, and then we waited (in the cold and the wind!) until it was Stephanie's turn to sing with the school choir for the Autumn Moon Lantern Song and then to dance in the Korean Dance. Towards the end of the evening, it was so freezing cold that some children were shivering as they danced - we were too chilled to stay for the last item, which was the gymnastics display!

15 September 2010

All praise and thanks to God!

Today is one year post-transplant!

14 September 2010

T+364

Praise God that Jeremy remained afebrile all night, so that he could have the first of his "live" vaccinations today. He was dosed up with Panadol, and then bravely watched as the doctor gave him his Measles Mumps Rubella shot in one arm and his Chicken Pox one in the other.

He stayed home for monitoring, but has not had any adverse reaction to his immunisations. Hopefully, he can go back to school tomorrow!

13 September 2010

T+363

Jeremy stayed home from school again - his temperatures were elevated, although he didn't have any more fevers today.

12 September 2010

T+362

As Jeremy was still coughing and we were all not 100%, we decided to do church at home this morning and then rest for the remainder of the day.

This evening Jeremy felt warm, and his temperatures were higher than normal ... by 10pm tonight he had spiked another fever!

11 September 2010

T+361

Still coughing day and night ...

10 September 2010

T+360

Hooray! Jeremy's last fever was at 1.30pm yesterday, so no more stumbling around in the middle of the night measuring out Panadol!

He still has coughing fits, and stayed home from school again - he has now missed the whole week of kindy.

9 September 2010

T+359

This time last year, Jeremy had his first 2 doses of TBI (Total Body Irradiation) - praise God that it worked!

Jeremy's fevers today were lower (in the 38 degree range) and his temperature spikes were further apart. He still has a bad cough, but is being encouraged to drink every time he coughs!

8 September 2010

T+358

A febrile Jeremy went to hospital clinic this morning, and we are thankful that

- he can stop his final transplant medication as from today, because his immune system has recovered and is almost back to "normal"

- he can now have his "live" vaccinations (eg. measles, mumps, rubella, chickenpox), as his immune system has responded well to his first 3 sets of immunisations with "killed" vaccines

- he only has to have 3 monthly blood counts instead of monthly ones - which means he only needs to go to hospital clinic once every 3 months, not once a month!

The bone marrow transplant doctor told us that Jeremy's fevers and cough are from an URTI (Upper Respiratory Tract Infection) - ie. a virus - which just needs Panadol and TLC!

Jeremy will have his next bone marrow aspirate on 13 October 2010, and then these will also be every 3 months.

7 September 2010

T+357 or 51 weeks!

More high fevers over 39 degrees and more coughing, but still a happy little boy who wanted to play all day!

6 September 2010

T+356

Jeremy's fevers peaked at 39.5 last night and remained high all night. However, we are thankful that he was still bright and cheeky at 4.30am, when he wanted BaBa to cuddle him in bed!

Although he was feverish all day and has developed a dry cough, he was happy to walk Stephanie to and from school, read 7 home-readers and make a guitar!

5 September 2010

T+355 - Happy Father's Day!

We were pleased to watch Jeremy and Stephanie performing their Father's Day items in church with their Sunday School friends. Jeremy's Infants Assembly were very cute as they sang this song with lots of actions -

Sometimes good things happen, God is there

Sometimes bad things happen, God is there too

Good or bad, happy or sad

I know that God is there

However, when it was time to pick up Jeremy from Sunday School, his teacher told us that Jeremy had been very tired in class. He also felt warm to the touch, but insisted that he wanted to go out to eat Tomato Rice and Crunchy for lunch. He was very drowsy in the car on the way to lunch, but brightened up amazingly when his meal arrived! He ate lots of Tomato Rice, a little bit of Crunchy, and then munched happily on prawn chips which PawPaw had bought for him.

He was 38.7 degrees when we came home, however his temperatures came down quickly with Panadol and he wanted to play (and not nap) this afternoon. Unfortunately, at dinnertime he started shivering - he had spiked another fever and just wanted to sleep (and not eat).

4 September 2010

T+354

We are so thankful that we could have an early Father's Day lunch with family!

3 September 2010

T+353

Jeremy visited the doctor before school this morning, who noted that his lymph nodes on his neck have not grown any bigger and that (although they are swollen) they are not of an abnormal size. He told us to show the bone marrow transplant doctor when we go for a checkup next week.

Thankfully we made it back to school in time for Jeremy to go shopping at the K-2 Father's Day Stall. He was very pleased with the present that he chose for BaBa, which is all wrapped up in his beautiful handmade wrapping paper and waiting to be opened on Sunday morning!

This afternoon after school, Stephanie and Jeremy were busy making gingerbread letter cookies for this weekend. Stephanie made D A D cookies, and Jeremy made B A B A ones!

2 September 2010

T+352

At 11.30am, Stephanie and Jeremy took part in a national performance of "Come Play Your Part" where school children all around Australia sang the same song at the same time! For more infomation and to hear the song, click here!

1 September 2010

T+351

This morning Jeremy said that his legs hurt, so his cyberchondriac mother went into a panic and hauled him off to see the doctor again. The doctor couldn't find a reason for his leg pain, and pointed out that they can't be very painful if he is still running around as usual! The doctor told us to monitor him and to come back on Friday for another review of his swollen lymph nodes in his neck.

Tonight Jeremy was very excited to wear his flashy shoes and light the way up the hill to the high school hall for our school's Twilight Concert. This concert is the highlight of the school's music program and is an opportunity for all the choirs, ensembles, bands and orchestras to perform. After waiting in a long queue which snaked down the road, we joined hundreds of students, parents and friends to fill the hall to overflowing! Jeremy enjoyed watching Stephanie sing in the Year1&2 Choir, and he danced along copying their hand actions!

31 August 2010

T+350 or 50 weeks!

Jeremy went to see the doctor about the lumps in his neck. The doctor told us that they are probably enlarged lymph nodes from an infection and that they should settle down in about a fortnight.

The doctor also told us that he can finally see both of Jeremy's eardrums (thanks to a drop of olive oil in his ear before bed) and that his ears are no longer inflamed.

30 August 2010

T+349

Tonight Jeremy asked "Mummy, did Jesus have sleep in his eyes when he woke up in the morning?"

29 August 2010

T+348

Jeremy says that his neck is sore, and we can feel some lumps there which he says are painful. But apart from slightly elevated temperatures, he is still running around and happy.

28 August 2010

T+347

A fun day playing games and eating jelly with Dr KonKon.

27 August 2010

T+346

This morning Jeremy asked his hair stylist (ie. BaBa) for this new style!

26 August 2010

T+345

The topic for News today was Your Favourite Book. Jeremy's class was asked to bring in their favourite book and share why they like it. We thought that he would choose his Where's Wally? book, as he and Stephanie both love finding Wally and his friends.

But Jeremy announced that he wanted to bring his Beginner's Bible that the hospital chaplain gave him last year because it has his favourite story about the Sneaky Snake (Genesis chapter 3)! When he was in hospital, he always wanted us to read that story to him! He came home and proudly told us that he read part of the story to his kindy class.

25 August 2010

T+344

Jeremy was pleased to receive this award at the K-2 assembly today!

24 August 2010

T+343 or 49 weeks!

Stephanie and Jeremy enjoyed the sunshine playing outside at a new playground, then were excited to use a self-checkout terminal to borrow some books and DVDs at a new library.

23 August 2010

T+342

Today Jeremy's kindy class went on a 3.5 hour excursion to Chatswood to see the train station, the shops and the library! Stephanie's class will go for a walk to Chatswood shops tomorrow to see what goods and services are provided there.

22 August 2010

T+341

Tonight Jeremy came for a hug and he felt hot. We took his temperature and it registered at 37.6. Instead of giving Panadol, we decided to wait and see what would happen as he was otherwise "clinically well". Thankfully, when we checked on him in his bed a few hours later, his temperature was normal. We suspect that possibly his temperature went up because he had been getting too excited playing with Stephanie, combined with a very busy weekend.

21 August 2010

T+340

A busy day out which started with queuing up to vote and ended with a long, long drive!

20 August 2010

T+339

Hooray - Jeremy finished a full week of kindy!

19 August 2010

T+338

As today was the last dose of antibiotics, Jeremy went to see the doctor after school. The doctor told us that his ears are still slightly inflamed, but that he will stop the antibiotics as the infection should clear up by itself. He wants to see Jeremy in a couple of weeks' time for a review.

18 August 2010

T+337

We are delighted that Jeremy has started trying to read the Bible to us at bedtime, instead of the other way around!

17 August 2010

T+336 or 48 weeks!

It seems so long ago, but it was only this time last year (17 August 2009) when Jeremy was admitted to hospital in readiness for his bone marrow transplant - and he would not be discharged until almost 3 months later (8 November 2009). Looking at him now, a stranger would never be able to tell that last year he had been so sick and that God worked so wonderfully to heal him of his leukaemia! All praise and thanks to our merciful God!

16 August 2010

T+335

Jeremy can take his medicine in his sleep! We were a bit late giving him his midday antibiotics, so we decided to give him his evening ones after he had gone to sleep. We went into his room and asked him to sit up for his meds. He obediently sat up, opened his mouth and sucked on the medicine syringe. Then he lay down and either went back to sleep or continued sleeping (we're not sure which!).

15 August 2010

T+334 or 11 months!

We are so thankful for our happy little man who has so much energy to run around and play with his sister. And we are so grateful for all your prayers for Jeremy.

After church this morning, we tried out a different sushi restaurant, where Stephanie and Jeremy ate copious amounts of tobiko and salmon sushi with much gusto and delight. Then we browsed around the shops, where we found a pair of flashing light sneakers for Jeremy - he was very pleased, because now he has the same brand as JeJe!

14 August 2010

T+333

This morning, Stephanie and Jeremy were very excited to play at Smaland - the play area in Ikea. We arrived at Ikea at opening time and were the second family in line, so they didn't have to wait around to go in. It was Jeremy's first time in an indoor play area since transplant!

After a lunch of Tomato Rice and Crunchy with family, we took Stephanie and Jeremy to their first house auction (just for a look-see!). They were very funny - at the beginning, they both stood right in front of the auctioneer and watched the proceedings very attentively, as if they were going to make a bid! Then Jeremy asked why we weren't buying it!

13 August 2010

T+332

Praise God for another happy day at school!

12 August 2010

T+331

Back to school for a whole day!

11 August 2010

T+330

Praise God that Jeremy woke up afebrile this morning, and remained so for the rest of the day!

This morning he went to hospital clinic for a checkup. The bone marrow transplant doctor is happy with Jeremy's progress, and has booked him in for another bone marrow aspirate on 13 October 2010.

In the past, oncology children used to go to Fishbowl (a room in the Pathology department specifically for oncology patients which was decorated like a fish bowl) to have blood taken before their clinic appointment. However, today we found out that Fishbowl is no more! Instead, a special pathology room has been set up inside the clinic so the oncology children no longer have to go traipsing around the hospital each time.

Jeremy had some of his "one-year bloods" taken today, to see the effect of his first 3 sets of immunisations and also to see whether he can have "live" vaccines (eg. chicken pox and MMR - measles mumps rubella). After he had his butterfly needle, he helped the blood collector put his blood tubes into a red cannister. He was very pleased to be allowed to put the cannister into the vacuum-operated chute and send it off to Pathology.

We were thankful that we finished at hospital on time, so that Jeremy could attend a Book Week performance at school. He said that he enjoyed it, and chatted about it excitedly when I took him home at lunchtime.

10 August 2010

T+329 or 47 weeks!

As Jeremy was still having fevers, he went to see the doctor today who prescribed another course of antibiotics as both his ears were inflamed (although Jeremy had not been complaining of an earache).

9 August 2010

T+328

Jeremy is still spiking fevers. He spent the day arranging for little surprises for Stephanie when she came home from school - he wanted me to wrap up a present for her and after lunch we baked gingerbread cookies.

8 August 2010

T+327

Jeremy had a good day today, although he was still feverish. We are thankful that he looked so happy and cheeky playing chasings with his grandparents after he ate his favourite dinner of Crunchy!

7 August 2010

T+326

Jeremy spiked a fever of 38.3 at 11pm last night and had more fevers today. He didn't want to eat that much (he skipped breakfast altogether), but was pleased to have some Tomato Rice And Crunchy for lunch and dinner - he has been asking for this dish for a while.

The other news of the day is that he had his first proper haircut post-transplant! His hair was starting to get in his eyes, so it was time to say goodbye to his soft fluffy locks of hair. We were a bit upset to see them fall to the floor - but Jeremy did not seem bothered at all! He just kept very still during his haircut, and at the end he proudly raced off to show Stephanie his new hairstyle. Time will tell whether his hair will still grow soft and wavy, or revert back to its pre-transplant pre-chemo spikes!

6 August 2010

T+325

Lots of fun in the sandpit park after school!

5 August 2010

T+324

Today was Open Day at school, where parents and friends could visit the classrooms and watch the children at work. We also enjoyed the exhibition "Sculpture on the Hill", where sculptures by the school children were displayed around the school.

Above is Jeremy's class sculpture - "How Does Your Garden Grow?". We were asked to collect plastic bottles during the school holidays so that they could make these flowers in class! The sculpture's message is "are [we] recycling and looking after our environment? Because if we don't care for our world, all we will have left is plastic."

Each child at school made a little clay figure to make the amazing sculpture below entitled "Chatswood Field". Can you find Jeremy's clay figure in the front row (click on the photo to enlarge it)?

4 August 2010

T+323

Today is Green Day at school - all children were asked to wear green for the International Year of Biodiversity, and to bring a gold coin so that the school can purchase native trees to plant in its new gardens. Jeremy wore a green T-shirt and a green cap - but Stephanie looked noticeably PINK as we walked into the school grounds! The only green clothing that we were able to find in her wardrobe was a Dora top with pink and green stripes (which she wore with a pink skivvy, pink jeans, pink vest and a pink cap!).

3 August 2010

T+322 or 46 weeks

Jeremy proudly told us that he can feel some new teeth coming through at the back of his mouth - they are his first set of adult molars on the bottom jaw!

2 August 2010

T+321

Jeremy was very pleased that it was Bank Holiday today, because it meant that BaBa could walk him to and from school, treat him with a slurpee and play Wii with him after school!

1 August 2010

T+320

We were thankful that we were all well so that we could go to church together as a family, and then enjoy fellowship with our housegroup friends afterwards.

31 July 2010

T+319

Jeremy was very pleased to spend the day with BaBa!

30 July 2010

T+318

There has been a confirmed case of whooping cough at school! Thankfully, the sick child is in Year 5 and doesn't play or mix with Jeremy's class. Even though Jeremy has now had his 3 doses of Infanrix Hexa (which protects against whooping cough and 5 other diseases), if Jeremy comes into contact with whooping cough (eg. someone in his class catches it), then he will need to go on a course of antibiotics as a preventative measure.

There has also been a confirmed case of chicken pox at school. Again, we are thankful that the sick child is in Year 6 and has not been in contact with Jeremy.

29 July 2010

T+317

A happy fever-free day at school!

28 July 2010

T+316

Around 10pm last night, Jeremy spiked a fever of 38.0 - he was given Panadol and quickly went back to sleep. So he stayed home from school today, but thankfully has not had any more fevers since.

27 July 2010

T+315 or 45 weeks!

Look who Jeremy brought home from school today! His name is Bear and he has come to have some adventures with us (which will be duly photographed and written up in the class book). Bear visited us 2 years ago when Stephanie was in Kindy (he was called Recycle Bear back then!). We are trying not to think about where he has been and how dirty he actually might be!

After blowing some bubbles outside with Jeremy, Bear had to have a special medical sleep ...

26 July 2010

T+314

We went to see the doctor after school today, as Jeremy still sometimes says that it hurts in his ear and that he can't hear what we are saying. The doctor didn't want Jeremy to have any more antibiotics, and tried to make an appointment with the local ENT specialist. However, as the next available appointment was in September, I told the doctor that I would speak to the bone marrow transplant doctor about seeing a specialist at hospital.

The bone marrow transplant doctor reassured me that Jeremy's ear problems have nothing to do with TBI or chemo, and that they are part of "normal" childhood illnesses. He will try to get an appointment for Jeremy to see the ENT specialist at hospital, as well as arrange for a hearing test.

Putting things into perspective, we are thankful that these are minor issues and that Jeremy is happy and active - and in remission! And, in the words of Jeremy's favourite Colin Buchanan song (I think he likes the drums!) -

Passing through, passing through on the way to heaven

Passing through, passing through on the way to heaven

Passing through, passing through on the way to heaven

Don’t let this old world get its grip on you

God’s children are only passing through

25 July 2010

T+313

Jeremy was excited to go to EeEe's concert - she was playing violin in an orchestra. His first comment was "The conductor's using a chopstick"! The next thing he said was "That man's not wearing any shoes!" and he pointed at one of the violinists! But he seemed to enjoy the concert (we left at interval because he was getting restless), and told us that he liked the third piece the best because it had a solo clarinet.

24 July 2010

T+312

Jeremy (and Stephanie) had a fun time running around at his schoolfriend's Pokemon party.

23 July 2010

T+311

Jeremy's favourite school day is Friday because his class has Golden Time after lunch. Golden Time means free play with the classroom toys!

22 July 2010

T+310

This morning Jeremy had an ear-ache, so the doctor told us to give him some more antibiotics. We are thankful that he is still running around happily at school (he even collided with a classmate at lunchtime and grazed his elbow) as if nothing were wrong with him!

21 July 2010

T+309

A cold but happy day at school!

20 July 2010

T+308 or 44 weeks

Praise and thanks be to God! Jeremy's results from his bone marrow aspirate on 7 July are MRD negative - ie. no detectable leukaemia cells! Thank you to all who were praying about this for us!

Jeremy was happy to go back to school today for the start of Term 3 of Kindy. We are thankful that he is well again, and pray that he remains healthy during this term!

19 July 2010

T+307

Stephanie and Jeremy were able to enjoy the sunshine and play outside at the park with two of their school friends.

18 July 2010

T+306

Still coughing a bit, so he stayed home today, but should be OK to start school on Tuesday!

17 July 2010

T+305

A happy day spent playing with family and eating home-made pizza and chicken wings!

16 July 2010

T+304

Praise God for another fever-free day!

15 July 2010

T+303 or 10 months!

Thankfully, no fevers today! He still has a cough and the snorts ...

14 July 2010

T+302

Still more fevers, so Jeremy went to see the doctor today. The doctor prescribed antibiotics for a middle ear infection, and panadol and rest for his respiratory virus (his fevers, cough and body aches are flu-like symptoms but he does not have the flu). It might take him more than a week to recover from his virus, given his lowered immune system. It is amazing that he still feels up to chasing Stephanie around the house and generally being a very active little boy at home!

13 July 2010

T+301 or 43 weeks

More fevers in the middle of the night, this morning and again after a much-needed nap this afternoon. But he was excited to make gingerbread letters and learn how to play Chinese checkers.

12 July 2010

T+300

More fevers around 38 degrees today - but otherwise lots of fun playing at home.

11 July 2010

T+299

Jeremy spiked a fever of 38.6 around 5.30am, and an even higher one of 39.0 around 11.30am, so he stayed home from church today. He was still febrile tonight, but ate lots of "dipping meat" and couscous for dinner. He has started coughing again, but is otherwise happy and bouncy.

10 July 2010

T+298

Jeremy was afebrile during the daytime, and enjoyed eating a delicious sushi lunch with family and playing with his cousins.

However, he woke up around 9pm with a low grade fever ...

9 July 2010

T+297

Another day of low-grade fevers and lots of happy play!

8 July 2010

T+296

Jeremy spiked a fever of 38.1 this morning and again this evening - probably from his immunisations yesterday. Thankfully, he was otherwise "clinically well" (ie. happy, full of energy, running around and eating as per usual) and enjoyed baking cherry muffins and playing Gruffalo with Stephanie!

7 July 2010

T+295

Thanks to all who have been praying for Jeremy!

Having fasted since last night, he was very hungry by the time it was his turn to have his special medical sleep around 1pm today - and he gobbled up lots of sushi, chips and cereal when he woke up! This time he was able to have his third set of childhood immunisations while he was asleep, thus avoiding the trauma of 2 additional needles. We should know the results of his bone marrow aspirate in a week or so.

While he was waiting at hospital to have his general anaesthetic, he went to the allergy clinic to have a skin prick test. Praise God that his new immune system is much less allergic than his old one! He only developed small lumps for the histamine control, one type of mould, and peanuts - there was no reaction for dairy, egg white, egg yolk, and lots of other types of nuts. We will speak to the immunologist later this week, but it seems that the next step will be some challenge tests under hospital supervision to determine that he has truly "lost" his food allergies when he had his bone marrow transplant.

6 July 2010

T+294 or 42 weeks

Stephanie and Jeremy went to see The Gruffalo at the Seymour Centre. Although we had read the book some time ago, Stephanie (of her own initiative) borrowed it again from the school library and read it to Jeremy - now both of them nearly know it for memory and had fun shouting out the lines with the other children in the audience!

As Jeremy has realised that he will miss breakfast tomorrow because of his special medical sleep, he asked to eat lots of cereal this afternoon! We are praying that the results of tomorrow's bone marrow aspirate will be free of leukaemia, and that he will not have a fever from his immunisations.

5 July 2010

T+293

The first day of school holidays meant a train trip to the city to visit BaBa at work!

4 July 2010

T+292

Psalm 12:6 - The promises of the Lord can be trusted!

3 July 2010

T+291

Jeremy enjoyed an extra special lunch of his favourite sushi -
salmon and tobiko!

2 July 2010

T+290

No fevers since his spike on Wednesday night and as he was otherwise "well", Jeremy finished Term 2 of kindy with a half-day of school.

1 July 2010

T+289

Jeremy had to miss the school Athletics Carnival today, because he spiked a fever of 38.5 in the middle of the night. This was very disappointing for him, as he had been looking forward to the "Mathletics" (as he calls it!) Carnival for weeks. But he didn't complain about not being able to go - with his usual understanding and acceptance of such things, he just said that he would go next year.

On the other hand, his appetite seems to be slowly coming back - he chomped through 2 dry Weet Bix for breakfast this morning!

Hopefully he is all better for his bone marrow aspirate and next set of immunisations on Wednesday 7 July.

30 June 2010

T+288

More coughing today and tonight.

29 June 2010

T+287 or 41 weeks!

Stephanie and Jeremy were excited about going out for a special dinner tonight "in the dark"! But recently, Jeremy's appetite has been down and he only ended up nibbling on a tiny bit of the tomato rice and crunchy that he ordered. We think that he is slowly recovering from a tummy bug that he had last week and that's why he is not eating as much as usual.

28 June 2010

T+286

After disappearing for a couple of days, Jeremy's cough is back ...

27 June 2010

T+285

We are thankful that we were able to enjoy lunch at a Japanese restaurant after church today.

26 June 2010

T+284

A fun day enjoying "crunchy pork" for lunch with the family!

25 June 2010

T+283

Praise God that Jeremy finished Week 10 of Term 2 of Kindy and that he was well enough to go to school all day!

24 June 2010

T+282

Hooray, no coughing in the middle of the night! Still an occasional cough when awake, but he was OK to go to school for the whole day - the historic day when Julia Gillard became Australia's first woman prime minister!

23 June 2010

T+281

Another happy half-day at school!

22 June 2010

T+280 or 40 weeks!

Jeremy was happy to go back to school for half a day today!

21 June 2010

T+279

As Jeremy's cough had been sounding worse at nights, we took him to see the doctor again today. However, his chest and throat are still clear (which is good) and the doctor told us that it just seems to be part of his lingering virus that he has had for over a month now!

20 June 2010

T+278

An afebrile day resting at home.

19 June 2010

T+277

An unsettled night, with Jeremy spiking a 39.4 fever around midnight and another 38.1 fever in the morning. Thankfully, his fevers responded to Panadol and so we let him go to the K-2 Bush Dance in the afternoon. For weeks he had been eagerly looking forward to the Bush Dance - at nights when he woke up, he would ask me "Is it the Bush Dance today?". We made sure that he had a nap beforehand, and although he didn't feel up to dancing, he was very happy to be there and watch the other children.

18 June 2010

T+276

Jeremy's temperatures are still going up and down, so he stayed home from school again today.

17 June 2010

T+275

We rang the bone marrow transplant doctor today, but she told us not to be worried about Jeremy's low grade fevers - we only need to be concerned if his temperatures go over 38 degrees! She also told us that his persistent cough is part of him slowly recovering from his infection several weeks ago - he will take longer to recover than other children because he had a transplant and his immunity is not "100%" yet.

16 June 2010

T+274

Today Stephanie and Jeremy celebrated the Dragon Boat Festival with the rest of the Infants School (K-2). The infants children were allowed to go to school dressed in their national costumes, and there was a special assembly where the children sang "I Can Sing A Rainbow" in both English and Mandarin. Students from Year 3 performed a Chinese play about the meaning of the Dragon Boat Festival, and students from Year 2 presented a Chinese poem, a Chinese Dance and a Korean Dance. Jeremy was pleased to watch Stephanie in the Korean Dance!

He must have been too excited about the special events at school today, because tonight he woke up with another low grade fever! No school for him tomorrow!

15 June 2010

T+273 or 29 weeks or 9 months!

Praise God that Jeremy is now 9 months post-transplant!

He woke up this morning with a low grade fever, so he stayed home from school to rest and recover.

14 June 2010

T+272

Jeremy was glad that it was a long weekend and that he didn't have to go to school today! Instead, he had a good day being active and enjoying the sunny weather.

13 June 2010

T+271

Enjoying EasyWay at Eastwood ... must have made the little man a bit stronger, because this afternoon he was able to push the Flymo and mow some of the backyard!

12 June 2010

T+270

Jeremy slept through until morning, so it was a great start to the day. As Sydney is in the midst of some beautiful sunny weather, we went out for a walk. The children loved getting out of the house, but both of them demanded "uppies" - although Jeremy did walk all the way home unassisted. We further reduced our carbon footprint with a Flymo hand mower gardening session ... which proved too heavy for either of the children to push effectively.

11 June 2010

T+269

Jeremy has finished week 8 of Term 2 of Kindy!

He was very excited to play in Sandpit Park after school - for weeks he had been asking and asking to go there, but the ongoing wet weather meant the answer was always "no"! Even after a few days of sunshine, the sand was still a bit damp and cold this afternoon - but not that this bothered him in the least!

10 June 2010

T+268

Today was Crazy Day at school, and Stephanie and Jeremy had a ball dressing up! Each child brought in a gold coin to raise money for Medecins Sans Frontieres, which was set up by a group of doctors and journalists who believed that all people should have access to emergency medical relief.

On a personal note, we are ever so thankful that we had access to (the best!) medical treatment for Jeremy!

9 June 2010

T+267

Thank you, Lord, for another day!

8 June 2010

T+266 or 38 weeks

Jeremy went to visit the doctor this morning about his cough. His chest is clear, and the doctor told us that it is all just part of his infection from a few weeks ago. Hopefully his cough will go away soon, as it must be very tiring for him.

7 June 2010

T+265

Sunshine at last!

6 June 2010

T+264

Jeremy let BaBa put grooming putty in his hair, and was very pleased with the results!

5 June 2010

T+263

Jeremy still has a cough, but is otherwise happy and energetic (which makes it hard for us to get him to rest/take it easy during the day so that he might recover fully!).

4 June 2010

T+262

Click here to see some photos taken by the Redkite photographer of the Sydney Swans Family Day on 22 May 2010!

3 June 2010

T+261

A full day back at school!

2 June 2010

T+260

Jeremy went to school for half a day, and enjoyed watching Stephanie's class perform during the K-2 Assembly. Her class recited the poem "The Owl and the Pussycat", while an "owl", a "pussycat", a "turkey" and a "pig" acted out the story on the stage.

1 June 2010

T+259 or 37 weeks

Thankfully no fever today - just a persistent cough.

31 May 2010

T+258

Jeremy had a low grade fever at 1am last night. It came down with Panadol, and stayed down until bedtime tonight, when he was given more Panadol. The fever was probably caused by his immunisations on Saturday. He had a quiet day at home, doing some school work and playing on the computer. He still has a bit of cough remaining from last time he was sick, and it seems to have become worse over the last 2 days.

30 May 2010

T+257

We were glad that we could have lunch with Jeremy's great-grandfather, grandmother, uncle and auntie after church today. TaiKon hasn't seen Jeremy since transplant, although he has been praying for him regularly.

29 May 2010

T+256

Jeremy had his second set of childhood immunisations today (the ones that he was supposed to have on 12 May). Hopefully, he will be OK over the next few days.

28 May 2010

T+255

Today was the end of week 6 - Jeremy is now more than half way through Term 2 of Kindy!

27 May 2010

T+254

At the moment, Jeremy's favourite food is homemade sushi with just plain white rice inside. He wants it for breakfast, school lunch, afternoon tea and dinner!

26 May 2010

T+253

Gumboot weather!

25 May 2010

T+252 or 36 weeks!

Tonight, BaBa and Mummy went to our first Cure Our Kids Parents Gathering dinner at North Ryde. Cure Our Kids is a charity that specifically looks after children with cancer and their families at Westmead Hospital, and it was great to meet other parents who had been through the cancer journey with their children and to share stories.

We were very encouraged to learn that some children have been in remission for 5 years or more - we sat next to a couple whose son had beaten 3 different types of cancers, who had a bone marrow transplant in 2001, and who has been in remission since . It was also good to catch up with other parents who had been in hospital with us last year, and to hear how their children are going with their treatment.

As to what Jeremy thought about Mummy not being there to tuck him in - well, that's between him and GooPaw!

24 May 2010

T+251

Back to school, after being away sick for a week and a half.

We pray that Jeremy doesn't catch any more infections, especially as the winter months are nearly here!

23 May 2010

T+250

As part of a special Sunday School this morning, Stephanie and Jeremy watched a fun puppet show presented by Quiz Worx!

22 May 2010

T+249

Today we enjoyed going to the Sydney Swans Family Day, which was hosted by the children's cancer charity Redkite. We had lunch at the Sydney Football Stadium, where Stephanie and Jeremy decorated kite-shaped pieces of cardboard and also had their faces painted (red and white, of course!). We were very surprised and pleased when they won 2nd prize in the banner competition - it was their first time making a banner, and we hadn't known what to expect!

After lunch, we walked across to the Sydney Cricket Ground to watch the pre-match "Redkite and OCF Celebrity AFL Game". Then it was time for the match between the Sydney Swans and the Fremantle Dockers to begin.

Jeremy was especially excited to be part of the guard of honour (with Stephanie and some other children of Redkite families) when the Sydney Swans ran onto the field. Last year, he wasn't allowed onto the field because he was too young. Unfortunately, our seats were at the opposite side of the field and we couldn't see any of the guard of honour because of the huge 4m high banner that the Sydney Swans run through.

Although it was pouring with rain this morning, thankfully the weather had cleared up when we arrived at the SCG and it was warm and sunny for the guard of honour. The sky remained clear for the first part of the match. However, we decided to leave at half time because grey clouds were looming, and by the time we walked back to our car it had started raining again!

21 May 2010

T+248

Thankfully, no more earaches today! Just a happy little chef who wanted to be wrapped up like a baby!

20 May 2010

T+247

Jeremy had his first ever earache this afternoon. He was quite upset - but Panadol and a nap made it all better!

19 May 2010

T+246

Jeremy says that he is "a bit better" today!

18 May 2010

T+245 or 35 weeks!

The doctor told us today that Jeremy's NPA last Wednesday has come back positive for RSV (a virus that causes respiratory infections). Being a virus, there is not much one can do except rest and recover. Hopefully, Jeremy's immune system will become stronger as it fights off this viral infection.

However, she wants Jeremy to continue with his antibiotics, as she is still waiting for some blood results which may show that he also had a bacterial infection - as antibiotics treat bacterial, not viral, infections.

17 May 2010

T+244

As nothing had grown from any of the blood cultures and tests, NPAs or throat swabs and as Jeremy remained fever-free, the doctor decided to discharge him from hospital today with a week's course of antibiotics (which should protect him IF anything were to grow and prove that he had a bacterial infection).

16 May 2010

T+243

Jeremy remained afebrile all day - so either the suspected virus had run its course, or alternatively the possible bacterial infection had responded to the antibiotics.

He and Stephanie had fun drawing on the whiteboard in his room and making up a menu for their cafe!

There was a bit of drama in the afternoon, when Jeremy was mucking around and toppled out of his bed. He was only a little bruised, but had managed to rip out the canula in his hand when he fell - thus requiring the doctor to insert a replacement canula into his right hand. She also decided to do a throat swab on him, as he was still coughing badly.

15 May 2010

T+242 or 8 months post transplant!

As Jeremy still had high fevers overnight, the bone marrow transplant team decided to start him on 1st line antibiotics as a precautionary measure while they waited for the results of the various blood tests etc.

He was much happier when BaBa and Stephanie came to visit him in Emergency, and brought a delicious lunch of chicken and chippies. It was good to see him eating a few bites of lunch, since he hadn't been able to keep anything down on Friday.

Later that afternoon, he was transferred to Variety Ward where he was given the sole use of a shared room there. Mummy was thankful for a sofa bed to sleep on, and we all were thankful when his temperatures finally dropped back to normal around 11pm - even with Panadol, he had still been febrile during the past few days.

14 May 2010

T+241

Jeremy was still highly febrile, and had coughing fits which ended up with him vomiting out what little he ate. A telephone call to Camperdown Ward in the evening resulted in us having to "bring him in", even though nothing had grown from Wednesday's NPA and he doesn't have a central line.

Poor Jeremy was not pleased about being woken up and carted off to hospital, where he was subjected to a chest X-ray and another NPA (this time to test for whooping cough). He also had a canula inserted into his left hand. He and Mummy spent the night in the Emergency Department, where Mummy slept on 2 chairs. Thankfully, he was in one of the Emergency isolation rooms - it would have been much more difficult to sleep in the general area with all the noise, lights and coughing out there!

13 May 2010

T+240

Another febrile day, with tops of 40.3 in the afternoon - but still a mostly happy and active little boy!

12 May 2010

T+239

Jeremy went to hospital clinic today, but did not have his immunisations or Fluvax because of his snuffy nose and cough. Instead he was subjected to an NPA (Nasopharyngeal Aspiration) - or in other words, a thin tube shoved up his nose and some snot vacuumed out of each nostril. The snot is then sent for cultures to see if they can identify a virus and then prescribe some medicine to treat it. Needless to say, NPAs are not Jeremy's favourite procedure!

Jeremy fell asleep on the way home from clinic, and when we got home he was shaking and feverish (39.7 degrees!). He was given Panadol and went to sleep. About half an hour later, he woke up wanting to eat popcorn and iceblocks and play computer - both good signs - but he was still febrile. The doctor told us that we should give him Panadol on a regular basis, and that he would call us if anything is grown from the NPA.

Thankfully, as he no longer has a central line, there is no need to admit him as soon as he has a fever - he can just recover from a virus at home like the rest of us!

11 May 2010

T+238 or 34 weeks!

In addition to his snuffy nose, Jeremy has now developed a barking cough - but thankfully no fever or sore throat.

10 May 2010

T+237

Jeremy still has a snuffy nose - hopefully, it will clear up quickly, and won't affect his next set of immunisations and Fluvax jab this Wednesday. We pray that he doesn't have a fever from Wednesday's injections or any other side-effects.

9 May 2010

T+236 - Happy Mothers Day!

We are so thankful that we can celebrate Mothers Day together as a family of four!

8 May 2010

T+235

Jeremy woke up this morning with a snuffy nose and a slightly elevated temperature, which thankfully came down (and stayed down) after Panadol.

Otherwise, he was his usual active happy self and was so keen on going to the NSW Fire Station Open day that we agreed to take him for a short time. However, this year's Open Day was not as spectacular as the previous 2 years when we were allowed up in the cherry picker and into the front seat of the fire engine. This year there were no cherry picker rides and children were only allowed to crawl around the back seat of the fire truck. But Jeremy was happy to be able to hold the big fire hose (with the help of a fireman) as it squirted water into a small red pond.

7 May 2010

T+234

Jeremy was delighted today to be able to go "shopping" and buy a Mothers Day present at the K-2 Mothers Day stall. It was his first Mothers Day stall (and Stephanie's last!).

Each child from K-2 was asked to bring in an unwrapped present worth $6, and then today each child brought in $3 to buy one of the presents from their class collection. So effectively we spent $18 on two mystery presents to be unveiled on Sunday! The money raised will be used for the K-2 end-of-year picnic bus fares and iceblocks.

Both children came home very pleased with their purchases, which were wrapped in their own beautiful handmade wrapping paper.

6 May 2010

T+233

Jeremy is still excited about his assembly item yesterday, and keeps showing us the dances of the other colour groups!

5 May 2010

T+232

Jeremy was very excited today for many reasons, one of which was that his kindy class performed at the weekly K-2 Assembly today. Each of the K-2 classes takes it in turns to run the weekly Wednesday assembly, which includes chairing the whole assembly as well as presenting an item.

Jeremy's class was the first kindy class to run an assembly this year, and they talked about colours. The class was divided up into red, blue, green, orange and yellow - Jeremy was in the yellow group.

Jeremy was supposed to say "yellow is bright and happy", but there was a bit of a mixup with the order in his yellow group and he said a few extra words too! Then he and another "yellow" girl did a dance - it was so cute! After all the colours had done their dances, their item finished with the whole class performing a dance together.

4 May 2010

T+231 or 33 weeeks!

No, it's not blood - just someone forgot to wear their painting smock at school today!

3 May 2010

T+230

The school office confirmed that the sick kindy girl has got chicken pox and that she will be away from school this week. As the doctor has told us that it is OK for Jeremy to be at school, we are praying that she hasn't infected anyone else who might then pass on the virus to Jeremy.

2 May 2010

T+229

It was really foggy this morning, but then the sun broke through and we had a great day. It was good to see that Jeremy had enough energy to run around throughout a longer than normal morning tea (we managed to catch up with quite a few people after church today). All this running meant that he was quite subdued in the car ride home, making us think something might have been wrong, until we realised that he had been playing chasings for about an hour!

After lunch and a much less active afternoon, both children enjoyed themselves washing the car and getting very wet in the process.

1 May 2010

T+228

We are thankful for a happy day spent with family enjoying "crunchy" (pork) for lunch and making both savoury and sweet jin deui!

30 April 2010

T+227

We had a bit of a scare this afternoon when the school office rang up to inform us that another kindy kid had been sent to sick bay with a suspected case of chicken pox. However, as that girl is not in Jeremy's class and as he doesn't play with her, the doctor told us just to watch and wait. We will ring the school office on Monday morning to confirm if she has chicken pox.

Otherwise, if he had been in close contact with her, he would have ended up in hospital for an injection of zoster immune globulin (ZIG) which provides temporary immediate protection against chicken pox - and he probably would have had to stay in hospital for a few days for further monitoring. Jeremy cannot have the chicken pox vaccination at the moment, because it is a live vaccine and his immune system has not fully recovered. Therefore, he is still at risk of serious illness if he comes into contact with infectious diseases such as chicken pox, mumps, measles, rubella etc.

29 April 2010

T+226

And as the weather is cooler and it is darker in the mornings, when Jeremy wakes up around 5.30am, he is happy to go back to bed for another hour or so - maybe he thinks it is still the middle of the night!

28 April 2010

T+225

The weather has turned cooler now, so Jeremy started wearing his winter uniform today.

27 April 2010

T+224 or 32 weeks!

On this day last year, Jeremy had his first platelet transfusion. So much has happened since then, and we are thankful that we no longer have to keep track of his platelet and red blood cell counts every few days and worry as they kept on dropping. If his platelet count fell to 20, then he needed a platelet transfusion - likewise, a haemoglobin count of 70 meant a red blood cell transfusion.

26 April 2010

T+223

The children were excited to catch the train to the city on this public holiday Monday - Jeremy proudly announced that it was his second time on a train (since transplant).

We had a fun outing and Stephanie and Jeremy tried Oporto burgers for the first time (minus the cheese and mayo, due to their allergies). Stephanie only wanted to eat the burger bun and shredded lettuce, while Jeremy refused to eat the lettuce and would only eat the burger bun and chicken fillet (separately, not together like a sandwich)!

But they both enjoyed the treat of hot chippies afterwards!

25 April 2010

T+222 - Anzac Day

Stephanie and Jeremy have been busy little cooks this weekend. Yesterday, they baked Anzac cookies and tonight they made sausage rolls. Unfortunately, after his enthusiastic cooking efforts, Jeremy refused to eat the inside of the sausage roll - he would only eat the fluffy bit of the puff pastry! At least he liked his Anzac cookies, and wanted to eat them for breakfast and also as dessert after dinner tonight.

24 April 2010

T+221

Today's special treat was lunch at Makoto Sushi - Jeremy's favourite sushi place. He and Stephanie were so thrilled about going there, because they both love sushi and it was Jeremy's first time that he has eaten sushi (ie. proper Japanese sushi with raw fish, not homemade sushi with cooked chicken inside!) since transplant.

For us, the special treat was enjoying his excitement as he ate his salmon sushi and tobiko sushi with such pleasure and delight.

23 April 2010

T+220

Today was the end of week 1 of Term 2, and Jeremy brought home "BoyBoy Bear". At the beginning of the year, every kindy kid at our school is given a teddy bear who sits on their desk during Term 1 and helps them learn about caring and sharing. The teacher introduces them to the Care Bears, and on rainy days the kindy kids watch Care Bears videos before school!

21 & 22 April 2010

T+218 & T+219

Stephanie and Jeremy love to play at Sandpit Park after school, and we are thankful for this unusually warm autumn weather where they can dig around in the sand and enjoy these sunny afternoons outside.

20 April 2010

T+217 or 31 weeks

First day of Term 2, and Jeremy was happy to be back at school. He must have been looking forward to it, as he woke up in the middle of the night saying "Dolls are dancing, D, D, D"! We pray that he has another enjoyable term of kindy, and that he stays healthy and doesn't catch anything from the other children at school.

This afternoon, the doctor told us that the results of last Monday's (12 April) bone marrow aspirate are MRD Negative (no detectable leukaemia cells) - praise God!

19 April 2010

T+216

Today was the last day of the school holidays, and we are thankful for a fun-filled break together.

This morning we went to the Uniform Shop early, so that Jeremy could try on and buy his new winter uniform - blue long sleeve shirt and grey trousers, with lots of room to grow! However, there is a 3 week transition period until winter uniform is compulsory, so he can wear his summer uniform this week while the weather is still warm.