KESJ

25 December 2011

noreply@blogger.com (Zippy7) — Sun, 25 Dec 2011 11:19:00 +0000

T+831

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

28 September 2011

noreply@blogger.com (Eleanor) — Wed, 28 Sep 2011 11:03:00 +0000

T+743

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!

15 September 2011

noreply@blogger.com (Eleanor) — Thu, 15 Sep 2011 11:26:00 +0000

T+730 or 2 years post-transplant!

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

25 August 2011

noreply@blogger.com (Eleanor) — Thu, 25 Aug 2011 09:55:00 +0000

T+709

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!

17 August 2011

noreply@blogger.com (Eleanor) — Wed, 17 Aug 2011 10:02:00 +0000

T+701

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.

15 August 2011

noreply@blogger.com (Eleanor) — Mon, 15 Aug 2011 10:54:00 +0000

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.

25 July 2011

noreply@blogger.com (Eleanor) — Mon, 25 Jul 2011 06:43:00 +0000

T+678

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.

17 July 2011

noreply@blogger.com (Eleanor) — Sun, 17 Jul 2011 06:31:00 +0000

T+670

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.

15 July 2011

noreply@blogger.com (Eleanor) — Fri, 15 Jul 2011 09:34:00 +0000

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!

20 May 2011

noreply@blogger.com (Eleanor) — Fri, 20 May 2011 04:10:00 +0000

T+612

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.

15 May 2011

noreply@blogger.com (Eleanor) — Sun, 15 May 2011 04:52:00 +0000

T+607

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!

11 May 2011

noreply@blogger.com (Eleanor) — Wed, 11 May 2011 09:48:00 +0000

T+603

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!

4 May 2011

noreply@blogger.com (Eleanor) — Wed, 04 May 2011 02:50:00 +0000

T+596

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.

20 April 2011

noreply@blogger.com (Eleanor) — Wed, 20 Apr 2011 09:16:00 +0000

T+582

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!

11 April 2011

noreply@blogger.com (Eleanor) — Mon, 11 Apr 2011 07:29:00 +0000

T+573

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.

10 April 2011

noreply@blogger.com (Eleanor) — Sun, 10 Apr 2011 11:43:00 +0000

T+572

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.

9 April 2011

noreply@blogger.com (Eleanor) — Sat, 09 Apr 2011 10:06:00 +0000

T+571

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.

8 April 2011

noreply@blogger.com (Eleanor) — Fri, 08 Apr 2011 05:34:00 +0000

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!

7 April 2011

noreply@blogger.com (Eleanor) — Thu, 07 Apr 2011 03:31:00 +0000

T+569

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 ...

6 April 2011

noreply@blogger.com (Eleanor) — Wed, 06 Apr 2011 02:24:00 +0000

T+568

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.

5 April 2011

noreply@blogger.com (Eleanor) — Tue, 05 Apr 2011 06:49:00 +0000

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.

3 April 2011

noreply@blogger.com (Eleanor) — Sun, 03 Apr 2011 08:11:00 +0000

T+565

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).

23 March 2011

noreply@blogger.com (Eleanor) — Wed, 23 Mar 2011 10:11:00 +0000

T+554

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 ...

23 February 2011

noreply@blogger.com (Eleanor) — Wed, 23 Feb 2011 02:51:00 +0000

T+526

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!

20 February 2011

noreply@blogger.com (Eleanor) — Sun, 20 Feb 2011 11:20:00 +0000

T+523

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!