Sunday, December 25, 2011

25 December 2011


Wishing you all a joyful Christmas as you celebrate the birth of King Jesus!

Wednesday, September 28, 2011

28 September 2011


Jeremy went to hospital today for his 2 Year Post Transplant Clinic. There are two major follow-up clinics for transplant survivors at 2 years and 5 years post transplant. We are thankful to report that his eyes, teeth, heart, lungs and blood results are all good! We were also thankful that there was no traffic on the way to hospital this morning (hooray for school holidays!), and that the eye clinic took the initiative to rearrange his afternoon appointment to earlier in the day so that we finished much quicker than expected.

Another good piece of news is that his next checkup with the bone marrow transplant doctor will be in 6 months' time!

Thursday, September 15, 2011

15 September 2011

T+730 or 2 years post-transplant!

We are so thankful to God for healing our beautiful boy!

Thursday, August 25, 2011

25 August 2011


Praise God for the wonderful news that Jeremy's bone marrow aspirate results are MRD Negative! Thank you for praying for him!

This means that last Wednesday was his final bone marrow aspirate! He will still have regular blood tests (6 monthly or so) as well as other health checkups, but no more bone marrow aspirates!

Wednesday, August 17, 2011

17 August 2011


We are thankful that Jeremy's bone marrow aspirate today was uneventful, and that the bone marrow transplant doctor had arranged for his 2-year bloods to be taken under general anaesthetic. We will hopefully know the results of both his aspirate and his bloods by the end of next week.

His next appointment at hospital clinic will be for his 2-year checkup of his heart, lungs, eyes, teeth and bones, and this will be at the end of September.

Monday, August 15, 2011

15 August 2011

T+699 or 23 months!

Praise God that Jeremy is 23 months post-transplant today!

He is looking forward to his bone marrow aspirate on Wednesday 17 August 2011 - partly because he wants to have a "middle of the night party" on Tuesday before he begins his fasting, and also because he has ordered a special meal to eat when he wakes up from his general anaesthetic on Wednesday!

Please pray that the results of this bone marrow aspirate will be MRD Negative.

Monday, July 25, 2011

25 July 2011


This morning before school, Jeremy had an appointment at Australian Hearing Services. He had another audiogram, which thankfully showed no further hearing loss.

He also did some different tests - listening the recording of a man reading a sentence and then telling us what the man said. These tests were carried out both with and without his hearing aids, and then again with background noise. In all cases, Jeremy was able to understand what the man was saying.

Sunday, July 17, 2011

17 July 2011

After church, we went to the Redkite Swans Family Day at the Sydney Football Stadium. This year, Stephanie and Jeremy had worked hard on their banner and were proud to win first prize in the banner competition! Unfortunately, the Sydney Swans didn't do as well in their match against the Freemantle Dockers!

Stephanie and Jeremy were happy to be part of a guard of honour as the Sydney Swans ran onto the Sydney Cricket Ground. We were pleased to see other Camperdown Ward survivors looking so well and to chat with their parents again.

Only a month to go before Jeremy has (hopefully) his last bone marrow aspirate on 17 August 2011.

Friday, July 15, 2011

15 July 2011

T+668 or 22 months!

We are thankful that Jeremy is now 22 months post-transplant and that we could enjoy a holiday in Melbourne. Stephanie and Jeremy saw snow for the first time!
Actually, the "snow/crushed ice" playground was at Harbour Town shopping centre in Docklands - complete with 2 bubble machines on a level above spraying out foam as if it were "snowing".

They also had a wonderful day playing at Scienceworks, and of course loved to swim in the serviced apartment lap pool!

Friday, May 20, 2011

20 May 2011


Thank God that the results of Jeremy's last bone marrow aspirate were MRD Negative!!!

His next bone marrow aspirate will be on 17 August 2011.

The immunologist is pleased with Jeremy's peanut progress, and told us that he no longer has to have a daily dose of peanuts. As long as he eats about 4 to 8 peanuts a week, his immune system should be fine.

Sunday, May 15, 2011

15 May 2011


Hooray! Jeremy is 20 months today!

We are thankful that this weekend we were able to share in his excitement of attending 2 of his school friends' birthday parties (1 on Saturday afternoon, and 1 today after church), and to see him come home so pleased with all the enjoyable things that he did and the delicious food that he ate. It makes us especially glad when he is so happy!

Wednesday, May 11, 2011

11 May 2011


A while ago, Jeremy had asked BaBa to take him to his next bone marrow aspirate, and was very pleased when BaBa arranged to take the day off work to drive him to hospital today. Although he was again last on the general anaesthetic list (because of his ESBL), Jeremy didn't complain and played iPad, cooking toys and Lego while he was waiting. Thankfully, his turn came at 11.30am - nearly an hour earlier than the previous time.

Jeremy wanted BaBa to hold the "happy gas" mask while he drifted off into his "special medical sleep". This time there were no problems when he woke up, and he made the nurses envious with his delicious smelling breakfast/morning tea/lunch of chicken burger and hot chips from the hospital cafe.

We will hopefully know the results of his bone marrow aspirate sometime next week, and his next bone marrow aspirate has been scheduled for Wednesday 17 August 2011.

In relation to his daily peanut dose, Jeremy has surprised us by suddenly declaring that he will eat 3 Peanut M&Ms every morning - and then proceeding to do so, chocolate and all!

Wednesday, May 4, 2011

4 May 2011


The immunologist has increased Jeremy's peanut dose from 1 to 2 peanuts per day. She wants to keep him on 2 peanuts per day for about 6 months, and then do another skin prick test. And Jeremy is happy to eat roasted peanuts instead of Peanut M&Ms - he calls his peanuts "my medicine"!

Next Wednesday he will have another bone marrow aspirate - please pray that the results will be MRD Negative.

Wednesday, April 20, 2011

20 April 2011


The immunologist told us today that we can increase Jeremy's peanut dose from 1/2 peanut to 1 peanut per day. As Jeremy does not like the chocolate part of the Peanut M&Ms (he refuses to eat his daily dose until the chocolate has been removed!), we will buy him some roasted peanuts instead.

It's a bit ironic - the first Easter when he can actually eat chocolate eggs/rabbits/whatever, and he doesn't want to!

Monday, April 11, 2011

11 April 2011


Hooray! Jeremy was very happy that he didn't have a fever today, so that he could start his one week's intensive school holiday swimming lessons at Willoughby Leisure Centre. Today he moved up a level from Turtles to Otters.

Sunday, April 10, 2011

10 April 2011


Jeremy continues to have fevers and a cough, but at least his fever spikes are further apart now and there are periods during the day when his temperature is normal.

Saturday, April 9, 2011

9 April 2011


Although Jeremy woke up with no fever, by mid morning he was 38.6 degrees and stayed febrile for the rest of the day. He has also developed a barking cough and a snuffy nose. However, none of this affected his ability to play all day, despite our attempts to get him to nap.

Friday, April 8, 2011

8 April 2011

T+570Unfortunately, Jeremy had a fever this morning, so he had to miss the Infants' Easter Hat Parade and the last day of Term One. He still wanted to model his hat, and says that he will wear it for next year's parade!

The doctor wanted to see Jeremy again today (before the weekend), but could find no evidence of a bacterial infection (ie. could treat with antibiotics). We were told to just continue with Panadol and Nurofen for his fevers over the weekend.

This afternoon, when we went to school to pick up Stephanie, Jeremy's teacher told us that there are 8 children away sick in Jeremy's class - that's about 1/3 of his class! Obviously there is something going around!

Thursday, April 7, 2011

7 April 2011


Still feverish with a headache this morning, so Jeremy saw the doctor again who confirmed that it is still a virus ... not much we can do but to wait and see ...

He reached 40.4 tonight ...

Wednesday, April 6, 2011

6 April 2011


Jeremy woke up with a fever of 39.2 degrees. We tried to give him Panadol twice, but he threw up after each attempt. So we waited until after breakfast (he was still keen to eat tuna and toast!) and then tried for a third time - success!

The immunologist told us that we can increase his daily peanut intake to 1/2 peanut, and check back with her in 2 weeks' time.

He was febrile all day and peaked at 39.8 degrees tonight.

Tuesday, April 5, 2011

5 April 2011

T+567 or 81 weeks!

Jeremy felt warm this morning and so we checked his temperature - 37.7 degrees! Although he was otherwise bouncy and happy, we decided to keep him home from school. So he missed out on mufti day, where the children could wear Red & White (for Japan), Black & White (for Christchurch) or Maroon (for Queensland) and bring a gold coin donation.

He was feverish all day and peaked at 40.1 tonight. He also complained that his head hurt. Diagnosis - a virus.

Sunday, April 3, 2011

3 April 2011


It's flu vaccination time, and everyone in our family needs to have it done. Yesterday was the day, and we are thankful that this year it has gone smoothly for us all! Last year, the flu vaccination caused Jeremy to have high fevers in the middle of the night. This resulted in a flustered mother making worried calls to Campderdown Ward as to whether or not we needed to bring him in!

After Jeremy had his needle, it was his turn to be allowed to push the syringe when Dr KonKon had his injection (Stephanie played nurse and pushed the syringe last time).

Wednesday, March 23, 2011

23 March 2011


After a month of eating a tiny bit of Peanut M&Ms every day with no adverse reaction, the immunologist told us that we can increase the dose to about 1/4 of a Peanut M&M. She will review it in 2 weeks' time, her aim being that he eventually eats 2 Peanut M&Ms per day!

When the bell rang this afternoon, Jeremy came out of his classroom proudly waving this award that he received at the Infants Assembly today. We had taken the children to Melbourne on Friday for a long weekend away, but we're not too sure what he told his class - because when we asked them what was their favourite part of the holiday, they both said "the POOL"! And it was only a simple rectangular serviced apartment lap pool ...

Wednesday, February 23, 2011

23 February 2011


This morning Jeremy was admitted as a day patient to Turner Ward for another supervised intake of peanut. The reason for this visit to hospital was because when we tried Jeremy on about 3 or 4 Peanut M&Ms on Sunday after church, he started coughing and saying he felt sick. Thankfully, he stopped coughing after about 15 minutes, but the immunologist wanted to watch him the next time that he ate peanuts.

We crushed up a Peanut M&M and he was given about 1/16th of a peanut to eat. The immunologist watched him for an hour and he didn't develop a cough. So she told us to give him the same tiny amount of peanut every day for a month, and then (if all goes well) to increase the dose. What an unusual type of medicine - Peanut M&Ms!

Sunday, February 20, 2011

20 February 2011


Today marks 2 years from Date of Diagnosis!

This morning we were awakened to shouts of "Autobots, TRANSFORM!" - Jeremy and Stephanie were happily playing Transformers in his room!

We are continually thankful to see our little man running around "just like any other little boy", and sometimes it seems that our year in hospital happened so long ago!

Thinking back - if Jeremy had been a "standard" case of ALL (Acute Lymphoblastic Leukaemia) and not his "high risk" case, he would only just be finishing his maintenance chemo as the standard treatment for ALL is 2 years!

17 February 2011


One responsibility as a parent of young children living in Australia is to make sure they can swim. So we've been making the effort to send them to regular swimming lessons. Thankfully, they have been enjoying them this time around (previous attempts have resulted in unhappy children). Although Stephanie is doing well, it was Jeremy that has been the focus of our attention (he has been all too willing to jump into the deep end with or without floaties). Given that he has sunk like a stone in the past, it was pleasing to hear feedback from the swimming instructor that Jeremy is close to being promoted out of the beginner class, and up to the next grade (Otters).

We are very thankful for his enthusiasm and joy, and it continues to gladden our hearts seeing him being so active.

Wednesday, February 9, 2011

9 February 2011


Thank God that the bone marrow transplant doctor had good news for us when we went to hospital clinic this morning - Jeremy's bone marrow aspirate results from last week were MRD Negative!

While we were there, he paged the immunologist, who happened to be running some allergy challenges this morning. So instead of going back to school in time for morning tea, Jeremy was admitted as a day patient in Turner Ward for a peanut challenge.

Initially a tiny bit of peanut butter was smeared on the inside of his bottom lip. No reaction, so 20 minutes later he was given 1/8 teaspoon of peanut butter to eat. This amount was increased every 20 minutes up to 2 teaspoons of peanut butter at the end of the challenge. We are thankful that his peanut challenge was successful, and Jeremy is pleased that he can now eat "anything"!

The immunologist told us to keep giving him peanut butter or peanuts on a weekly basis to keep his immune system familiar with them. She also recommended that we do the same thing with dairy products and egg, as well as other types of nuts (to which he had no reaction when he did his skin prick test - he only had a mild reaction to peanuts and mould).

Jeremy's next bone marrow aspirate is booked for 11 May 2011 - he will keep having these every 3 months until he is 2 years post transplant.

Thursday, February 3, 2011

2 February 2011


By the time the anaesthetic nurse called Jeremy at 12.20pm today for his special medical sleep, he was very hungry and ran ahead of her to the treatment room! She was surprised and commented that it was a nice change to having to persuade and coax reluctant patients that it was their turn.

It was supposed to be a "routine" bone marrow aspirate. But nothing is ever "routine", and this time when Jeremy woke up from his general anaesthetic, he was hysterical. It was like he was having a night terror, when he yells MUMMY! MUMMY! MUMMY! even though I am right there with him. The recovery nurse called it Emergence Delirium and said it was because he woke up suddenly! Usually, he is a bit sleepy when he comes to, but is happy when given some food to eat.

He eventually calmed down enough to sit up and eat his combined breakfast/morning tea/lunch ...

We will hopefully know the results of his bone marrow aspirate later next week, and are praying that it is MRD Negative.

Saturday, January 22, 2011

22 January 2011


Just checked at the supermarket and discovered that Stephanie can eat some varieties of Oreos too!  Even though they are labelled "Milk's Favourite Cookie", some (but not all) types of Oreos are dairy-free. Maybe it is because you are supposed to dunk them in milk.

Friday, January 21, 2011

21 January 2011


Today marks one year without a central line! It was taken out under emergency surgery on 21 January 2010 because it caused a serious infection which landed Jeremy in ICU.

We are thankful that all that remains of such a traumatic time is one little scar, and one very active little boy who has just finished a week-long holiday swimming program - something he was definitely not allowed to do with a central line.

Today was another first for him - the first time that he has tried Oreos, and he loved them!  We have gradually been introducing him to various dairy products, but the interesting thing is that he doesn't like the taste of most of them (eg. milk, yoghurt, icecream, soft cheese).  Perhaps this is because he still has his "old" tastebuds, although he has a new immune system.  So far, he likes tasty cheese and chocolate - and now Oreos!

He has also eaten foods which contain egg with no adverse reaction.  We will continue to try him out on such foods before we present him with an actual egg (fried or boiled) to taste.

Only one more week of the school holidays to go, before our little man starts Year One!

And only one and a half more weeks until his next bone marrow aspirate on 2 February 2011 ...

Thursday, January 6, 2011

6 January 2011


This morning Jeremy went to Australian Hearing Services for a checkup hearing test and adjustments to his hearing aids. It is good that Australian Hearing Services was able to do the same hearing test as the Audiology Department of the Children's Hospital - because this meant that we could cancel tomorrow's appointment with Audiology and spare Jeremy the frustration of having to do the same test twice in a row!

So the next time that Jeremy has to go to hospital will be on Wednesday 2 February 2011 for a bone marrow aspirate.

The BIG news of the day is that Jeremy can now have cow's milk!

Having waited in vain since July last year for the immunologist to contact us for challenge tests for his food allergies, we decided to run our own challenge test on Jeremy (as he had previously been to hospital for two such challenge tests in 2008). We were reasonably confident that he would have no allergic reaction, because both his blood tests and skin prick tests showed that he was no longer allergic to dairy. However, he was slowly introduced to cow's milk and he is very pleased with the results. We are thankful for this unexpected "side-effect" from his bone marrow transplant - a new bone marrow meant a new immune system!

We will now start to give him different dairy products - but very gradually and in very small amounts. Then we might plan to have our own challenge test for eggs (and maybe later, even nuts!).