Tuesday, March 31, 2009

31 March

Today has turned out to be just another day of waiting...

Jeremy's temperature spiked at 38.7 degrees today, and we still do not know what is causing his elevated temperature. Despite all this, Jeremy still seems to be in good spirits, and was happily playing with Play-doh. Later, he escaped the ward, and went for a nice walk to the oncology clinic. On the way back, he visited the the Starlight room where he was given a blue (balloon) sword.

Monday, March 30, 2009

30 March

Jeremy has been receiving antibiotics as a precautionary measure against his elevated temperature. Blood samples were taken from his lines last night, but we won't know the results for at least 48hrs. This is because it takes that much time to grow a culture to see what bugs are in his system.

In other news, Jeremy was able to start his next stage of chemotherapy today. The 6 hour drip was administered today, so at least we are on a Monday schedule for the time being. With this set of drugs, the blood counts must exceed a certain thresholds in order for them to continue.

Sunday, March 29, 2009

29 March

Saturday was the first time in some time that we felt things were starting to get back to a degree of normality. On Sunday, Jeremy was quite well behaved and managed to sit through service. We even got to go out for a quick lunch - but later, we were brought back to reality.

After having a quiet/rest period in the afternoon, Jeremy came out and wanted to sit with his Baba for a bit. However, he felt quite warm to the touch. The first temperature reading was 37.85 at which point we attemped to take his clothes off. After some protesting and discussion, we did another reading which read 37.60

We called the hospital, who advised that we should come in and be prepared to stay. So we did, and after some more observation (and waiting) at hospital, we were advised that they were going to start 48hrs of Antibiotics.

Friday, March 27, 2009

27 March 2009

Praise God! The doctor rang and told us that the number of blast cells in Jeremy's bone marrow has dropped considerably (preliminary counts show that there are between 5-10% blast cells, but these numbers will be confirmed with further testing in a few days' time) - the last bone marrow results were over 80% - and she is happy to proceed with the current treatment. Thanks to all who prayed for this for Jeremy!

Thursday, March 26, 2009

26 March 2009

We had another middle-of-the-night party last night, in anticipation of Jeremy's general anaesthetic this morning. He had a bone marrow aspirate and lumbar puncture, and recovered quickly from his "special medical sleep" once presented with food! We should know the results late tomorrow.

Tuesday, March 24, 2009

24 March 2009

This morning Jeremy saw the orthopaedic doctor again, who was pleased with how Jeremy's right arm is regaining its movement. He told us to come back again in a month, by which time his arm movement should be back to normal.

Recently, Jeremy's hair has been moulting all over his pillow, his clothes and our clothes - hopefully, this means that the chemo is working!

Sunday, March 22, 2009

21 March 2009

The highlight for today was going to see Circus Quirkus. Jeremy was offered free tickets by one of the nurses at Westmead. It turned out to be a very special treat, as it is a non-animal circus, and therefore particularly suitable for sick kids.

There was a happy clown who did lots of funny tricks, a juggler that could bounce/juggle up to 7 balls, and lots of dazzling acrobatics. 2 fairies tumbled around the stage in unison, whilst the Zim brothers - 3 acrobatic men - performed many astounding feats of acrobatics. One man stood on top of another, who stood on the 3rd man, and they toppled over and landed safely in a tumble roll. Another man juggled a slightly built lady with his feet, doing somersaults and tumbling over and over. Finally there was a "hula-hoop lady" who managed to do acrobatics whilst hanging from a metal hoop suspended high off the stage.

The kids had a great time at the show and have even managed to write thank you letters/drawings to the sponsors.

In other news... Jeremy is starting to receive a reduced dose of steroids. Hopefully this will mean he becomes less prone to the roid-rage, suffers less attacks of the munchies, and manages to sleep better overnight (and allow the rest of us to sleep through).

Saturday, March 21, 2009

20 March 2009

The last dose of Vincristine and Daunorubicin was administered today (Fri 20th) - there were 4 in this first phase. Jeremy can look forward to 2 more Asparaginase needles in the bottom next week. 

On Thursday (26th) he is booked in for his "day33" bone marrow aspirate - the result will help the doctors determine if Jeremy is High Risk, or Standard Risk. The doctors expect the test result to show zero leukaemic cells in his bone marrow, as this first stage of treatment is designed to induce an immediate remission. As an aside, in the past 2 years, there was only 1 other case where the patient still had leukaemic cells on day 33.

Wednesday, March 18, 2009

18 March 2009

This morning we all went to hospital to have our blood taken. Stephanie screamed down the hospital, even before the nurse had taken her blood! But she was happy to have her photo taken for the Oncology Children’s Foundation (Jeremy refused to take part) with the other children at the oncology clinic!

We will not know the blood results for a couple of weeks, as the blood needs to be sent off to the Red Cross for tissue typing.

Jeremy's next bone marrow aspirate has now been scheduled for 26 March 2009 instead of 25 March.

Tuesday, March 17, 2009

17 March 2009

Jeremy went back to preschool for the first time since he was diagnosed, and he had a wonderfully happy time!

Unfortunately, the doctor told us that there are still significant numbers of blast cells in his bone marrow. She will continue with his current chemo program, and re-assess his treatment when he has another bone marrow aspirate on 25 March 2009. She told us that some children are initially slow to respond to the chemo, but eventually the chemo does remove all the blast cells in their bone marrow.

However, as a precautionary measure, she wants Ken, Stephanie and me to go to hospital tomorrow and give a sample of our blood, to see whether we could be possible bone marrow donors for Jeremy should he need to go down this track. At the moment he does not require a bone marrow transplant, but the doctor is just getting prepared.

Thank you to all who prayed for Jeremy’s bone marrow aspirate yesterday. We know that God is good and that He will look after us, whatever happens.

Monday, March 16, 2009

16 March 2009

Last night, we woke up Stephanie and Jeremy for a middle-of-the-night party, as Jeremy was not allowed to eat or drink from midnight onwards! They were both very excited, and asked for another party tonight!

Jeremy had a long day at hospital, but was quite patient and didn't complain very much. Mondays seem to be the busiest day at the oncology clinic! He had his bone marrow aspirate under general anaesthetic, but we will not know the results until late tomorrow. He also had a 3-hour blood transfusion, as well as his chemo.

Friday, March 13, 2009

13 March 2009

Today Jeremy put a central line in Baby (his glow worm that sings him to sleep everynight!). Stephanie also put a central line in her doll PoPoChan! Then they were both very busy taking blood and giving medicine to them!

Tuesday, March 10, 2009

10 March 2009

We are thankful that there is no fracture nor infection in Jeremy's right arm. The orthopaedic doctor advised that the nerve from his neck down his arm had probably been stretched when his central line was inserted. As Jeremy is gradually using his right arm more, we just need to keep an eye on it and encourage him to use it - and see the orthopaedic doctor in a couple of weeks' time.

Monday, March 9, 2009

9 March 2009

Today, Jeremy and Eleanor went to hospital for his Monday chemo injection. However, the clinic was very busy and, although he had an 11am appointment, he did not have his injection until after 2pm.

Jeremy has been unwilling to use his right arm since his central line was put in. Today the doctor decided that it needed further investigation, and Jeremy was sent to have an X-ray of his right shoulder to see if there was a fracture. However, as this X-ray did not show any fracture, the doctor sent him back to have another X-ray of both shoulders. As this second X-ray was also inconclusive, he was then seen by an orthopaedic doctor who thought that Jeremy might have an infection in his bone. However, Jeremy did not have a fever, which is the first sign of an infection! At 4.30pm, Jeremy was told to come back to hospital tomorrow morning and see another doctor at the orthopaedic clinic.

As it was very late notice, the Leukaemia Foundation was unable to provide transport to the hospital for tomorrow (they were able to drive Jeremy and Eleanor back home afterwards). Thankfully, after a few phone calls, a friend from church kindly offered to drive them to hospital in the morning!

World's Greatest Shave

Well, I finally signed up for it, even though I have already shaved my head.

Here is a picture from last night after I shaved it a bit closer. Now I just need a shaver sponsor :-)

Sunday, March 8, 2009

7 March 2009

Jeremy and Ken had their heads shaved today!

Saturday, March 7, 2009

6 March 2009

The doctor told us that although there were no longer any blast cells in Jeremy’s blood, there were still blast cells in his bone marrow. She had expected that there would be no blast cells in his bone marrow by now, and has scheduled another bone marrow aspirate on 16 March 2009.

5 March 2009

This morning, Jeremy had a general anaesthetic so that he could have another lumbar puncture and bone marrow aspirate. This didn’t seem to bother him – what made him upset was the fact that he was not allowed to eat until after the operation (and his last meal had been at 6.30pm the night before!).

4 March 2009

We were grateful to learn that the Leukaemia Foundation provides courtesy transport for leukaemia patients. So, today, volunteer drivers from the Leukaemia Foundation came to drive Jeremy and Eleanor to and from the hospital.

2 March 2009

Jeremy was discharged from hospital. For the next few weeks, he will have to come to hospital on Mondays, Wednesdays and Fridays for chemo at the oncology clinic.

1 March 2009

Jeremy was taken off his drip and allowed to go outside, so Ken took him to the outdoor playground at the hospital – he was soooooooo excited!

28 February 2009

Praise God! Today, Jeremy’s blast cell count was 0.9 – the doctor wanted it to be less than 1.0 today, and when he was admitted to hospital it was over 300. Thanks to all who prayed for this for Jeremy.

Jeremy had his first dose of chemotherapy today. It went well, and without any allergic reaction to the chemo drugs.

24 February 2009

Jeremy felt well enough to get out of bed and walk down the corridor to the toy room, where he discovered a tricycle. So Ken had to run after him with the drip, while Jeremy rode around and around the nurses’ desk terrorising the nurses!

21 February 2009

Jeremy was pleased to be given the special Auburn Police “Bluey Room” in Camperdown Ward (the oncology ward). The room was a single room with flashing police lights on the ceiling and a wide screen LCD TV.

This afternoon, Jeremy had a general anaesthetic so that a central line could be inserted into his chest. This would allow easy access for taking blood samples and giving medicine intravenously. He was then given steroids through a drip, to kill off the leukaemic cells (blast cells).

20 February 2009

This afternoon, Jeremy was admitted to The Children’s Hospital at Westmead and diagnosed with Acute Lymphoblastic Leukaemia (ALL).  He has to undergo a 2-year treatment of chemotherapy.  By midnight, he had been subjected to a blood test, a lumbar puncture, a bone marrow aspirate, a chest X-ray and a blood transfusion, and 2 canulas had been inserted into his arms.

To find out more about ALL, go to the Leukaemia Foundation website at http://www.leukaemia.org.au/web/aboutdiseases/leukaemias_all.php. 

Background Information

Around late January, Jeremy started to appear to have a pale complexion, but had a healthy appetite, and was his usual active self.

However, during the week of 16th February, Jeremy became very tired and was unable to do the things he normally did. He complained about being tired walking up the hill, and was unable to hold onto the shopping trolley for very long.

On the Thursday evening, he had a mild fever, so on Friday he went to have his blood tested. The doctor called with the results, and instructed us to take Jeremy to the hospital immediately.