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!