Friday, July 31, 2009

31 July 2009

Hooray! Jeremy was discharged from hospital this afternoon! The doctors were happy that his fevers have gone and that his appetite has returned. Thanks to all who prayed for him about this! Actually, this morning he was so hungry that I thought he was back on steroids again!

30 July 2009

This afternoon, Jeremy was granted his first Gate Pass! This means that he was allowed out of hospital for a few hours between medications. He had a fabulous time playing in the sandpit park with Stephanie, and just being at home! It cheered all of us to have some family time together away from hospital!

Wednesday, July 29, 2009

29 July 2009

Today was the last needle in the bottom for this block of chemo. Jeremy has been very tolerant of his treatment in the past, but he is really getting sick of these needles.

2 things are preventing the doctors from allowing Jeremy home. 1. He is still suffering from low grade fevers of about 38 degrees (the doctors have not managed to determine the cause of this) 2. He needs to eat and drink a lot better - his current efforts are not enough to sustain him.

Something that cannot be measured is that we can see that Jeremy is beginning to be feeling better - this has started over the past couple of days. He is becoming more energetic/lively, is starting to be cheeky again, and is beginning to eat a little more (He managed a quarter of a weetbix for breakfast, and then was happy to eat 2 pappadums). For us, it is of great comfort and encouragement to see him returning to his old self.

Tuesday, July 28, 2009

28 July 2009

The weekend passed uneventfully, with no more changing of rooms and no blood transfusions required. Jeremy has gradually been recovering his cheekiness, and has been sitting up and playing with cooking toys and Duplo. His tummy doesn't seem to hurt as much. He has also been asking for food and eating it by himself, instead of us trying to feed him - but he is still only eating tiny portions.

Yesterday (Monday), he went for a walk outside to the hospital playground - this was his first time going for a walk since he had been admitted 2 weeks ago!

Today, Jeremy went (on Ken's shoulders!) to radiation oncology in the adults hospital to be measured and to have a CT scan of his lungs - this is in preparation for his radiotherapy treatment later down the track. The radiation oncology team were very impressed that he lay still watching a DVD for the whole time! Hopefully he will be just as good when he has the actual radiation!

Friday, July 24, 2009

24 July 2009

Friday was a changeover day. This turned out to be quite good timing as I took a few things home. Not long after I had left, Eleanor was informed that they were moving rooms again!

We managed to have a good chat with the doctor. Jeremy's blood counts have been recovering well, and whilst he still has fevers, they seem to be improving. Our concern now is that he has lost a fair amount of body weight. He has a stomach bug (Giardia), which is causing loss of appetite, so he is on drugs for that. He is also on anti-nausea drugs, and something else to help alleviate his tummy aches. For the time being, they have started putting nutrition through his lines.

When we were first admitted to hospital, Jeremy would (naturally) be reluctant to eat when he had a fever, but now he has a tummy bug, we are seeing that he doesn't want to eat at all. It has been very difficult to sit here and watch him slowly waste away, and therefore I am glad to see something finally being done to support his body until he regains his appetite.

23 July 2009

Jeremy's counts have been recovering, and the doctors decided to restart one of the chemo drugs today. Thankfully, we were not moved today, but managed to stay as the sole occupant of a (small) double room.

Jeremy is still having fevers, and feeling quite lethargic. As such, he did not want to eat much at all (he opted out of dinner). He ended up getting the nurses to change his bed multiple times. Late in the evening, he managed to have a big vomit in his bed. No pizza was found, but I did see & smell blueberry yoghurt he had eaten at lunch, even though it was only 3 spoonfuls! Even later again, his nappy leaked diarrhea into the bed. On the bright side, the nurses were kinda sympathetic, and at least for Jeremy - the night was a case of "better out than in!".

Although I specifically asked to speak to one of the senior doctors, we missed out today. However, I did speak to one of the dieticians and we had a pretty good chat about things. Thankfully, they managed to find some "enhanced" drinks suitable for Jeremy to try out (which is difficult given his allergies).

Wednesday, July 22, 2009

22 July 2009

Jeremy had another nose bleed today. His platelets were low, but it started when the nurse put a little tube up his nose to take a snot sample. Thankfully, it was not as dramatic as his first nose bleed, and stopped by itself after a few minutes. He had a platelet transfusion shortly afterwards.

This morning, Jeremy wanted to sit up and play playdoh! This was encouraging, because previously he only wanted to lie on his bed and either watch TV or sleep. He was also pleased when Ken brought him some lunch which he had specially ordered!

Jeremy and Ken moved rooms again tonight! They are still in Camperdown Ward, but have moved to a room of their own (it is a shared room, but noone is in the other bed) because apparently something has grown from Jeremy's poo sample. Hopefully, we will know more tomorrow when Ken talks to the doctor.

Tuesday, July 21, 2009

21 July 2009

Another day, another move! At least this time they are staying in Camperdown ward, but have downgraded from a single room to a shared room.

It seems that Jeremy might finally be starting to feel better and be on the mend. However, the doctor is still holding off on some chemo for the time being.

Monday, July 20, 2009

20 July 2009

The good news today is they moved Jeremy back to Camperdown ward. They moved him into a single bed room late Monday evening.

Jeremy still has fevers and does not want to eat.

19 July 2009

Although the single room in Clancy ward seems cold and dark, it is much quieter and more peaceful compared to Camperdown ward. It is away from general visitor traffic/screaming kids/etc. The facilities and support is less than what we are used to in Camperdown ward, but the nurses have been just as nice, even if they have more patients to look after, and less experience with oncology patients.

It was very pleasing to see that Jeremy was very happy to see visitors today. He really perked up when his visitors arrived, and even got out of bed at one stage to go to the toy room to see what his sister and cousin was doing.

This events this weekend were quite draining. The poor expectation management left me both concerned and slightly angry at times.

Long rant starts here. Please don't complain about my rant - you don't have to read the below - I just need to vent it out.

The normal red blood transfusion turned into an "on" and "off" saga. They changed their mind multiple times between Friday PM through to just after midnight on Sunday morning when it finally started. They had been doing 2 blood tests each day - early AM and PM. I was very annoyed when they did a 3rd blood test late Sat evening (why take MORE blood from a kid you know is already lacking blood?).

We had been pushed out of Camperdown ward on Saturday despite Jeremy being a high risk patient. The air conditioning in Clancy is not the same isolated positive pressure one they have in Camperdown ward. It seems to be the regular garden variety

We were not given the Sunday morning blood test results until late Sunday afternoon, and it seemed that they did not notice he had a very low platelet count. We were then told there were none available for him in Westmead, and that they would have to order some from the city, which could take until the next morning to appear. This was particularly distressing as Jeremy's nosebleed on Friday lasted over an hour, and only stopped after they gave him a platelet transfusion.

The one doctor was responsible in the decision making process of the 3 issues above. At the end of the weekend, I was quite irritable and wasn't happy about this particular doctor's manner. After getting home, I can reflect that the experience and circumstances left me concerned at the time, but I do accept that they are all doing their best.

Ultimately, God showed us he was the one looking after Jeremy when the platelets showed up before anyone had expected. We had been asking about the timeframe, and the staff could only advise "anytime between now and Monday morning", and "we don't know because it was not classed as an urgent delivery". After we decided to give up asking questions, we decided we should stop worrying about things we have no control over, and let God worry about it. Not long afterwards, the nurses came in and told us the platelets had arrived (much earlier than anyone had expected).

End rant...

Saturday, July 18, 2009

18 July 2009

Tonight, Jeremy and Ken moved from a single room in Camperdown Ward (which specialises in oncology) to a single room in Clancy Ward (which looks after oncology and other patients). Another post-tranplant patient needed the single room in Camperdown Ward, and Jeremy was not allowed to move to a shared room in Camperdown Ward because he has diarrhea (which only started after he was admitted to hospital). Apparently, he will be able to go back to Camperdown Ward if nothing is grown from his poo samples.

Jeremy is still highly febrile, and refusing to eat.

Friday, July 17, 2009

17 July 2009

Jeremy had a massive nose bleed this morning because his platelets were low - it lasted over half an hour, and stopped once he had a platelet transfusion. We needed 2 nurses to try to control the bleeding, and it was quite traumatic for Jeremy. Thankfully he had no more upsets this afternoon, and was able to sleep for the rest of the day.

Thursday, July 16, 2009

16 July 2009

Daniel and I visited Jeremy today. Jeremy was really pleased to see him, and made the effort to sit up, as he had been asking for "Sook Sook's special chicken wings". He was also willing to drink some special soy smoothie that Daniel prepared for him. He didn't drink that much - maybe 20mls, but something is better than nothing at this stage, considering he only nibbles on food like a small mouse.

Jeremy is still suffering from a fever (over 39 degrees). We think this might be making his skin more sensitive, as now he is agitated by his nappy and is quite tender (he complains "OW!" when we help lift him up).

He is still spending most of his time sleeping/resting. The chemo is still being delayed until he recovers more. His blood test was repeated, and they have determined that it was due to some antibody being present. When they retested with a different procedure, they determined that the coags results were okay.

Wednesday, July 15, 2009

15 July 2009

The blood samples taken from both of Jeremy's lines have grown something, meaning it is likely to be a bacterial infection. This is of some comfort, as last time around they did not grow anything and could not explain the fevers. However, this means that he is likely to stay for at least a week. Thankfully, he has started to respond to panadol this time, but his fever is still coming and going during the day. It spiked around 39.8 degrees. This meant the doctors have decided to hold off on his chemo treatment for the time being to allow him to stabilise.

Jeremy had a platelet transfusion earlier today, and was due to have red blood pack (haemoglobin) tonight.

He had a blood test done today (coags), and it came back with irregular results. This was repeated in the afternoon, with the same result (2 needles in the arm makes for a grumpy little boy). They will repeat this test tomorrow (Thu).

Tuesday, July 14, 2009

14 July 2009

1am - Jeremy wakes, but seems ok.
4am - Jeremy wakes, and feels hot to the touch. The fever has arrived - the temperature check shows 39.2 degrees. Phone call made to hospital, and all 4 of us get in the car to go for a drive. There was more traffic at this early hour than I had expected, but it was a smooth trip. Stephanie and I get back to try to catch more sleep, but it evades me...
Around 11am or so, they finally get a bed in Camperdown ward.
We made a second pilgrimage to Westmead today - the little man had asked me to go the shops to purchase 2 varieties of soy yoghurt and rice crackers!
Hopefully we all get a decent sleep tonight.

Monday, July 13, 2009

13 July 2009

No fever yet!

We all spent the day at hospital clinic today, and Jeremy had Asparaginase and Vitamin K. Jeremy and Stephanie had fun in the Starlight Room, making craft from styrofoam balls and pipe cleaners and playing the computer games there. Jeremy will go back to hospital clinic on Wednesday, unless he spikes a fever beforehand.

Friday, July 10, 2009

10 July 2009

Jeremy went to hospital clinic today for a platelet transfusion and Asparaginase. He will go back to hospital clinic on Monday for more Asparaginase, unless he develops a fever over the weekend!

Thursday, July 9, 2009

9 July 2009

Yesterday was a long day at hospital. Jeremy was given Vincristine (from a drip through his central line) and Asparaginase (needle in his bottom). We met the oncology radiation doctor, who explained the radiation procedure and showed us the radiation room. If he goes ahead with a bone marrow transplant, Jeremy will receive TBI (Total Body Irradiation) which will hopefully remove any remaining blast cells. He will have to lie still for 20 minutes twice a day for 4 days - however, he can watch a DVD during that time, and we can talk to him via a microphone in the next room.

We also met with the bone marrow transplant doctor who told us that Jeremy's MRD (Minimal Residual Disease) from his last bone marrow aspirate was 7% - the MRD is the most accurate method of measuring how much leukaemia is still in his bone marrow, whereas the initial figures of 3-4% were just from looking down a microscope. The bone marrow transplant doctor seemed more optimistic this time and is hoping to finish this course of chemo, wait for the MRD from the next bone marrow aspirate (which will be mid August), give Jeremy some more chemo and TBI, then proceed with the bone marrow transplant.

Sunday, July 5, 2009

5 July 2009

Jeremy finished his 5 days of Mitozantrone and Cytarabine, and was very pleased to be discharged from hospital this afternoon. On Wednesday he will go to hospital clinic for more chemo, and will also visit the radiation clinic at the adults hospital - he will not be having any radiation on Wednesday, it will just be for him to become familiar with the doctors, nurses and equipment there, so hopefully when he does have radiation, he will not need a general anaesthetic.

The doctor also told us that she expects him back in hospital by the weekend for another prolonged fever!

Thursday, July 2, 2009

2 July 2009

The bone marrow transplant doctor spoke to Ken today and told him that -

- Jeremy's blast cells need to come down to zero for a successful bone marrow transplant

- Jeremy will have an initial visit to the radiation clinic at Westmead adults hospital next week in preparation for a bone marrow transplant, but this does not necessarily mean that he will be going ahead with a bone marrow transplant

- there is suitable cord blood which could be used for Jeremy, if he does proceed to a bone marrow transplant

Please continue to pray for God's mighty healing hand to be at work in Jeremy.

Please also pray for a speedy recovery from whatever virus/cold/flu bug that both Ken and I have, so we have the energy to look after Jeremy and Stephanie.

Wednesday, July 1, 2009

1 July 2009

Jeremy and Ken went to hospital today for the start of another course of the same high dose chemo, which will hopefully reduce Jeremy's blast cells to zero. Thankfully, they have a bed in Camperdown Ward (the oncology ward).