Thursday, April 30, 2009

30 April 2009

Jeremy's blood counts were OK today, so he had his 6-hour drip of Cyclophosphamide. Hospital clinic was unusually quiet, and he enjoyed the big screen TV and DVD player all to himself! He had fun doing jigsaw puzzles with the nurses, and cooking them ham, pie and biscuits out of yellow playdoh! He will go back to hospital clinic on Monday for a blood test and checkup.

Tuesday, April 28, 2009

28 April 2009

This morning Jeremy proudly showed the orthopaedic doctor that his right arm has regained its full movement - thanks to all who prayed about this for him!

Monday, April 27, 2009

27 April 2009

Jeremy was supposed to have his 6-hour drip of Cyclophosphamide at hospital clinic today, but his blood counts were too low. Instead, he had to have a platelet transfusion and also a red blood cell transfusion. This was his first platelet transfusion, and the bag of platelets looked like murky orange cordial! He had a bit of an allergic reaction to the platelets, but he was fine after he was given some Hydrocortisone. Jeremy will go back to hospital clinic on Thursday to see if his blood count is OK for his Cyclophosphamide treatment.

Friday, April 24, 2009

24 April 2009

Yesterday was Jeremy's last dose of Cytarabine, and thankfully he has had no more fevers from this chemo drug! He will have another 6-hour drip of Cyclophosphamide on Monday, then will have a break from chemo for a couple of weeks to allow his bone marrow and his body to recover. However, he will still need to visit the hospital clinic at least once a week to check his blood counts and to have red blood cell or platelet transfusions where necessary. Once the doctor is happy with his blood counts, then Jeremy will have his Day 79 bone marrow aspirate - hopefully this will take place in mid-May.

Otherwise, Jeremy has been active and happy - and he and Stephanie have been enjoying their preschool/school holidays playing together and going on little outings!

Monday, April 20, 2009

20 April 2009

This morning Jeremy went to hospital clinic for the start of his 4th week of Cytarabine. We also met the bone marrow transplant doctor who told us that

- Eleanor needs to have her blood taken again for tissue typing, because of an administrative error last time this was done

- It is unlikely that Eleanor will be a match for Jeremy - they are more interested in looking at the parents' tissue type to help them find a match for him

- We will not know until after the Day 79 bone marrow aspirate as to whether or not Jeremy will be classified as high risk and therefore will require a bone marrow transplant - apparently there are several different factors that they take into consideration at a molecular level, and it will not be just simply whether there are no blast cells in his bone marrow as at Day 79

- However, the transplant team will start searching now for a matching donor from their worldwide database, just in case he does need a bone marrow transplant (which hopefully he doesn't!)

He also reminded us that if people would like to help Jeremy, then the best way would be to either donate blood (visit your local Australian Red Cross collection centre - or register to become a bone marrow donor. If you are between 18 and 40 years of age and in good health, then you can join the Australian Bone Marrow Donor Registry - Although you cannot donate blood or bone marrow specifically for Jeremy, all leukaemia patients need many blood transfusions during their treatment and some may also require bone marrow transplants.

Friday, April 17, 2009

17 April 2009

Watch Channel 10 tomorrow (Saturday 18 April) at 2pm and look out for Stephanie! She will be part of the guard of honour as the Sydney Swans run onto the field in their premiership match against Carlton tomorrow.

Unfortunately, because of insurance issues, Jeremy is not allowed onto the field because he is under 4 - but you might see him in the background!

The Sydney Swans are raising money for the Oncology Children's Foundation. Tomorrow is also the launch of their GOAL 4 A GOAL program which starts next week - the Sydney Swans are asking people to donate 50c for every goal that they kick in the 2009 season.

Tuesday, April 14, 2009

14 April 2009

Thankfully, Jeremy didn't have a fever over the long weekend, and we enjoyed lots of family time celebrating Easter and having fun together. Today Jeremy went to hospital clinic for the start of his 3rd week of Cytarabine - he will have 4 weeks of Cytarabine, so he is halfway there! Unfortunately, one of the side effects of Cytarabine is loss of appetite - a big contrast to his non-stop eating habits when he was on steroids!

Thursday, April 9, 2009

9 April 2009

No fever to date, but yesterday the community nurse took a sample of Jeremy's blood to check his blood counts. She telephoned later in the afternoon to let us know that his haemoglobin (red blood cell count) was low, and therefore he needed to have a blood transfusion. We were surprised, because he has had so much energy over the past few days and we thought that his haemoglobin would be higher. So today we went to hospital for a 3.5 hour blood transfusion.

Monday, April 6, 2009

6 April 2009

Since last week, Jeremy has been taking the chemo drug Cytarabine, which is given into his central line for 4 days a week. This morning he went to hospital for a lumbar puncture and his dose of Cytarabine. Tomorrow and the 2 days after that, the hospital community nurse can come to our place and give him his Cytarabine so that he can go to preschool etc. We hope that this week he doesn't spike a fever from the Cytarabine, and also that his blood counts are OK so that he won't need a blood transfusion on Thursday.

Stephanie's photo has appeared on the Oncology Children's Foundation website in relation to an article about the Sydney Swans, Ryan O'Keefe and their GOAL 4 A GOAL program which starts next week - the Sydney Swans are asking people to donate 50c for every goal that they kick in the 2009 season! Click here for more details.

Friday, April 3, 2009

3 April 2009

Jeremy was discharged from hospital today! He has been so happy and cheeky in hospital, that you wouldn't know he was sick!

Thursday, April 2, 2009

2 April 2009

The doctor told us that they still do not know why Jeremy had a fever on Sunday night, however his fever on Tuesday night was probably due to the chemo drug Cytarabine. If he remains afebrile for 48 hours, then he can go home tomorrow! We will then continue with his current chemo treatment and review his progress on Day 79 when he will have another bone marrow aspirate - hopefully he will be in full remission (ie. no blast cells in his bone marrow) by Day 79.

The doctor also told us that the tissue typing results for Ken and Stephanie have come back and that they are not a match. She is still waiting for the results for Eleanor.

Wednesday, April 1, 2009

1 April 2009

Jeremy was able to attend a playgroup in the Parents room.

He was a very busy painter - he created a few limited edition art-works, he then played with some jigsaw puzzles, relxaed on the floor with a car mat, and even managed to play with play-doh.

We heard one possible side-effect of a chemo drug being administered - it can cause temperature spikes! This can explain the 38.7 fever seen on Tuesday, but it cannot explain Sunday's temperature. Given that nothing has been grown from the blood samples, this leaves us in the dark and waiting...