Monday, November 30, 2009

30 November 2009


The weather today was so much cooler than the weekend - and although Jeremy still felt a bit warm, his temps were marginally cooler than yesterday (and most importantly, it was under 38 degrees!).

The little man skipped his morning nap, and had a longer nap in the afternoon (almost through to dinner time). This had us worrying a bit (and popping in to do frequent checks on him). After his nap, he seemed a lot better and was keen to play Mario Kart.

Sunday, November 29, 2009

29 November 2009


Jeremy was very excited when Dr KonKon, and later KonKon and PawPaw came over to visit - and he wore them all out by asking them to chase him around the house!

His temperatures are still hovering around 37.6 degrees, but thankfully he didn't spike a fever!

Here is a recipe for coffee-coloured nasogastric feeds - mix 3 cans of Isosource with 1 can of water, and the results are below!

28 November 2009


Jeremy is still on his "See Food" diet at the moment.

He asked for crispy bacon for breakfast, tasted quite a few slices, but ended up only nibbling on bits of it and giving up. The bacon wasn't 100% crispy (it's not that easy to do, even with the oven!), but he did eat something which is better than nothing.

There was some good news in that he did manage to eat some nectarines. However, he was a bit stubborn about drinking today. However, he is accepting our efforts to push more fluid down his nasogastric tube after the previous day's blockage!

We have to constantly remind ourselves not to worry about his actual intake, as he is being supported by the feeds.

It was quite hot today, and he seemed to feel quite warm to the touch as well. A temperature check showed he was around 37.7 degrees, thankfully it did not go higher and he seemed to be happy playing wii and other games.

Friday, November 27, 2009

27 November 2009


Today's event was a blocked nasogastric tube!

Tonight, as we went to attach Jeremy's feeds to his ng tube, the machine started beeping. Normally, it is just a simple case of ensuring the lines of the feed bag are not kinked, and resetting the alarm. However, as it kept beeping, we looked closer and realised that it was his nasogastric tube that was blocked! We tried pushing down some water, then attempted to draw some up, but it was quite stubborn, and nothing seemed to work.

After 15mins of no progress, we ended up calling the nurses at Camperdown ward and asking for advice. We were worried that we would have to go in to Emergency and get the tube replaced (Jeremy is still not eating or drinking anywhere near the required amount). They suggested using some coca cola to see if it would help clear the line. After another 5-10mins, it finally gave in, and the line started working again (it could have been the coke mixing into the fluid in his ng tube and helping to dissolve the blockage!).

Thankfully, this morning's visit to hospital was uneventful in contrast. The doctors are happy with his progress (they do not expect his appetite to return to anywhere near normal for quite a few months).

Thursday, November 26, 2009

26 November 2009


Jeremy's appetite is always better when he is at home (surprise, surprise!), and today he gobbled up some nectarine, cucumber and soy icecream! However, he needs to eat much more before we can stop his nasogastric feeds - and he also needs to drink much, much more (at the moment, we can put the water that he is not drinking down his nasogastric tube).

Jeremy likes to end the day with a calming backrub from BaBa!

Wednesday, November 25, 2009

25 November 2009



As Jeremy has been afebrile for 48 hours and as his course of antibiotics finished today, the doctors told us to go home!

Jeremy was glad to be out of hospital, and started ordering what food we are to cook for him and when we are to cook it! He helped to season baked chicken wings for dinner, and made a good effort trying to eat not only the chicken skin but also the chicken meat!

Here are some photos of Jeremy taken on Monday at the hospital playground while we were waiting for his room in Camperdown!

24 November 2009

T+70 / 10 Weeks!

It was a relatively quiet day in hospital for Jeremy. He had a nap in the morning and played with toys. He was happy to eat jelly at lunch, but didn't really have much appetite for much else - he even lost interest after a couple of hot chips.

Tuesday, November 24, 2009

23 November 2009


Jeremy stayed in hospital today, and he moved rooms twice!

In the morning, he was moved out of his standard twin room (which he did not share) and across the hall into a single room. This was a lovely bright room, with a nice outlook over the secret garden, but a slightly strange layout/configuration. However, not long after they arrived in their new room, they were informed that they would be moving back down to Camperdown ward. A patient down there needed to move to Variety ward, whereas Jeremy did not need to be in Variety as he did not have an infectious disease!

He had fun playing outside in the secret garden (watering rocks!), whilst his Camperdown room was being cleaned.

Monday, November 23, 2009

Wonderful News !!!

The doctors have told us the MRD results of last week's Bone Marrow Aspirate (day 60), and it has come back negative. This means that the MRD machine was unable to detect any leukaemia cells. This is the great news that we all have been praying for.

He will have more Bone Marrow Aspirates on a regular basis to check that the leukaemia does not come back, but at the moment he is in remission.

Thank you to all who have been praying for Jeremy for this miracle.

To God be the glory
Great things He has done!
The bone marrow transplant
Has healed our dear son!
The latest results of his bone marrow be -
There's no more leukaemia in Jeremy!
Praise the LORD! Praise the LORD! ...

22 November 2009


Today was a good family day at hospital. Stephanie and Jeremy played happily together and watched a bit of the Spongebob Squarepants special on Nickelodeon (all day SBSP!).

Jeremy was also in good spirits, and relatively full of energy. Thankfully the aircon at hospital was robust, and it was still very comfortable inside (going outside was like walking out into a furnace!).

Sunday, November 22, 2009

21 November 2009


Discharged, but not for very long...

Jeremy was discharged before lunchtime today, as he had been doing well, and was now on his new antibiotic. We would have to bring him back each day, around midday to have this med in his central line. We came home to have lunch and dinner together, which was great.

However, after dinner, he started feeling warm to the touch again, and we had to take his temperature. This showed he has a fever, and a quick call to the hospital confirmed that he had to come back in again. The children had both been asleep for some time, so we were thankful that KonKon was able to come and drive Jeremy back to hospital.

Jeremy was stuck in Emergency for quite a few hours - it wasn't until around 2am that they got a bed in Variety ward. A different room this time, but it is good that they could then get to sleep for a few hours.

Saturday, November 21, 2009

20 November 2009


Jeremy was allowed out on a gate pass today as he did not have a fever after his new antibiotic went through around lunchtime. It was good for him to be home for a few hours, he could start learning to share with Stephanie again :)

It was pretty hot outside - the car's computer thought it was 34 degrees outside Westmead Hospital, and by the time we got close to home, it was showing 41 outside! We were also thankful to be getting away from the mosquitoes! Eleanor killed a mozzie last night, but unfortunately Jeremy seemed to have a couple of bites/lumps on his hands. The door to his room is lacking an auto-close mechanism, which is quite unusual. I think the air-conditioning is not quite the same as what we are used to in Camperdown...

It's also quite alarming to think that there are mozzies to be found in a ward housing kids with infectious diseases...! So there are a few extra things to start praying for :-)

Thursday, November 19, 2009

19 November 2009


Last night, Jeremy was placed on vancomycin (in addition to the 2 first line drugs). The blood culture test had come back positive for a 'gram positive' bug, but today they managed to narrow further to a 'gram positive cocci bug'. Anyway, we are now going to move exclusively to a drug starting with the letter 'T', and this will eventually be given as a daily dose. However, since Jeremy is just beginning on this drug, it has to be introduced slowly and given every 12 hours.

The new 'T' drug was given at 2.30pm, but his temperature still managed to peak at 39.2 degrees at 3pm.

The good news is that they have identified the bug, and have a specific drug for it. Also, since the plan is to give him this drug daily (aiming for 12pm noon), the plan is for him to be afebrile for 24hours so he can be discharged. Then we would just bring him in each day for his daily drug dose until the infection is gone.

In other news, Stephanie got her first filling at the dentist. It was an event with much screaming/wailing/howling, and a river of tears were shed, but the cavity was filled.

The cause of complaint appeared to be the foul tasting anaesthetic that smelt like citrus air freshener (which was used as an alternative to a NEEDLE). The poor little thing was so distraught at the taste that she sat up in protest and howled for a few minutes! Thankfully this was after most of the drilling was done (the hole was so big you could drive an imaginary tonka truck down to the gums).

Anyway, since princess needs to have soft foods for the next 24 hours, she got a large slurpee for the walk home, and soy ice cream after dinner.

18 November 2009


Jeremy's temperature peaked overnight at 37.9 degrees, so he was allowed out on a gate pass today. Dad had a cracker of a headache, and Mum was totally worn out, but we were both extremely glad to have him home for a few hours.

As we were required back at hospital by 5:30pm, we planned to have a larger than usual afternoon tea instead of dinner. For poor little Stephanie, this meant that when she walked in the door after school, we whisked her off to be washed and cleaned. We had a nice visit from Aunty J and we sat down together for "high tea", after which we had to quickly get ready to jump in the car to race back to Westmead.

It was good to hear S & J chatting happily during the drive out there (they do fight after being apart - it must be adjusting to sharing attention!). Although J was happy, and did not complain about being tired or sick, he still registered a 38.4 degree temperature when he got back to hospital. As they have not yet determined the cause of the fevers, he might be required to have an extended stay at hospital. If that is the case, we are hoping to be transferred back to Camperdown ward as soon as possible!

Tuesday, November 17, 2009

17 November 2009

T+63 / 9 Weeks

As I write this update, Jeremy is back at Westmead Hospital.

Jeremy has not had any steroids since Sunday morning, as he was nill-by-mouth for yesterday's operation, and they decided to stop it yesterday afternoon. Today, Jeremy still ate breakfast, but not with as much gusto as his previous meals. He was still happy and full of energy, but his hands felt a bit warm (but not fever like, and his head/neck was okay). Closer examination of his hands/feet show that a rash is appearing again (looks like the GVHD again).

Of course, once we decided we were concerned, we then had to follow through and take his temperature - which turned out to be 38 degrees. What follows, is some agonising about the result. So we pray about it and decide to double check. This confirms a fever at 38.4 degrees.

More agonising - We decide we have to call the hospital. Jeremy seems well and not tired/sluggish like he has been with some previous temperatures/infections. Despite that, and our suspicion that it was a fever from the re-appearance of his GVHD, and we reason that it was due to discontinuation of the steroids. The doctor tells us to come in, but to come to clinic and not emergency. By the time we packed our stuff and get out there, his temperature had dropped to 37.6. They decide he has to be admitted as he did spike a fever, and it's better to be cautious with someone in his condition.

They started Jeremy on two different first line antibiotics almost immediately, but he was left to sit around inside clinic for quite a few hours. A bed was eventually found, but unfortunately it was not in Camperdown ward (its in Variety ward, where the people with infectious diseases are!). However, there is no requirement for them to leave his room, so they should be okay for the time being. They even said he could go out onto his balcony, where all the pigeon droppings are! (not that you'd want to)

So the deal is as follows. If nothing is grown from the blood samples collected, (that means no infection is found) - then he can go home after 48 hours. If something is grown, then he is likely to be detained for at least a week after the first clean sample.

Monday, November 16, 2009

16 November 2009


Although we were told to be at hospital clinic by 8am this morning, it was only at 12.20pm when Jeremy had his "special medical sleep" for his bone marrow aspirate. As we had stopped his nasogastric feeds at 2am because he was supposed to be "nil by mouth" 6 hours prior to his general anaesthetic, he was a very hungry and very cranky little boy by the time it was his turn!

We later found out that because he previously had the ESBL bug, he will always be considered "infectious" and will be last on the general anaesthetic list! Knowing this, next time we will stop his feeds a bit later in the morning ...

However, he recovered quickly from his general anaesthetic, and happily ate some rice crackers and apple before being allowed to go home. We will not know the proper results (MRD or Minimal Residual Disease) of today's bone marrow aspirate for about a week, but are still praying that it will be totally free from any leukaemia.

The doctor stopped his steroids today because his GVHD rash has disappeared - and tonight we already noticed a drop in his appetite. Please pray that he will keep eating!

Sunday, November 15, 2009

15 November 2009

2 months today, and 1 week at home from hospital!

Jeremy's appetite is slowly continuing to grow - thanks to all who prayed about this! Hopefully he will keep eating once the doctors stop his steroids - he is being weaned off them at the moment.

Tomorrow morning he will have a "special medical sleep" for his bone marrow aspirate - thanks to all who are praying about this for Jeremy!

Saturday, November 14, 2009

14 November 2009


Jeremy vomited twice this morning. Once was during his morning Wii session, after we had given him some meds via his nasogastric tube - the next time was just after our second attempt at putting in a salt-tablet infusion down his tube. However, this second time, we had spaced out the meds 20 minutes apart, so there was no need to redo all of the medicines a third time!

Jeremy's appetite was much improved today. It started off reasonably well with some slightly overcooked bacon for breakfast (it was crunchy, which he seemed to enjoy). The added bonus here is that bacon is relatively salty, so hopefully it helps his sodium levels (which are on the low side, hence the need for 6 salt tablets a day).

Jeremy also made a huge mess of the 'Goo-Paw' style noodles we offered up today, and he seemed to enjoy the pork we cooked with char siew sauce. He got stuck into watermelon and demanded some passionfruit gelato. After dinner, he even washed his tablets down with coca cola - a huge effort and a massive change from a few days ago.

Friday, November 13, 2009

13 November 2009


Jeremy had a pretty good day today. He did not need to go to hospital for a checkup, so he managed to relax and enjoy his 3rd full day at home.

He still had 2 naps, but from our perspective, he managed to eat more than the previous day. At breakfast, he asked to eat some tuna on toast, and he ate about half a slice on his own. For lunch, he asked for chicken schnitzel, but we didn't have any chicken, so we gave him some hastily prepared pork with panko (japanese bread crumbs). Although he chewed through a few small slices, the food critic in him decided that he didn't like the crunchy bread crumb coating. Our dinners are getting earlier and earlier, and today was no exception. This time, Jeremy ate some carrot, red capsicum, and 3 spoons of rice.

We are very happy to report that Jeremy has been a very good boy with his medicines. We leave the pills in a small dish, and tonight he picked them up and swallowed them without any prompting or complaints. For this we were very surprised and thankful, as some days, we have had to spend much time and effort to 'persuade' him to take his meds.

This Monday (16th), Jeremy will be going to Westmead for a bone marrow aspirate. He will be having these on a regular basis for some time going forwards. Please pray that it will show that he has healthy donor bone marrow, and is totally clear of leukaemia.

Thursday, November 12, 2009

12 November 2009


This was the second full day back at home for Jeremy. We have been working at trying to get him to drink more fluids during the day. Our target is 500mls of water each day, and we have been giving it in 100ml cups. He has been unhappy with drinking so much, but during the day, he has been reluctantly taking sips between games of Wii (The Wii Play Tank game).

We had a pre-breakfast game of Wii tanks, and we finished the 20 levels together! It was more impressive today because the colours on the TV were broken - the blue tank was red, and the red tank was yellow.

His main eating achievement today was at lunchtime - he ate just over 2 homemade dairy-free egg-free pikelets with a smattering of apricot jam.

Jeremy has settled into having extra naps during the day. The first is when Stephanie leaves for school, and a nap after lunchtime (before Stephanie returns from school).

Wednesday, November 11, 2009

11 November 2009


Today's appointment was 8:30am at Westmead, which meant a very early start to the day for the whole family. Thankfully, Jeremy did not have to do much waiting, and the news was pretty good. The doctor was pleased with Jeremy's blood counts and electrolyte levels, to the point where he decided that we don't need to go back to hospital clinic this Friday. They even managed to get back by 11am.

Next week, he said that we can drop down to 2 visits, and that future visits might only be once or twice a week (not Mondays, Wednesdays and Fridays as previously advised!). Thank God for this, as we are still exhausted from Jeremy's hospital stay!

Jeremy's next visit to hospital clinic will be on Monday 16 November for his first post-transplant bone marrow aspirate. We are earnestly praying that the results of this bone marrow aspirate will be completely clear of leukaemia cells. This will be our constant prayer over the next few months and years (indeed for the rest of his life) - that the leukaemia will not come back (ie. relapse).

Jeremy is still not eating or drinking much (although he is trying to do so), and gets tired very easily. He becomes frustrated when he is unable to wander around the house because we have hooked him up to his Kangaroo Pump for feeds or fluids. In order to provide enough sustenance to maintain his weight, his nasogastric feeds need to go in over 16 hours (mostly overnight), but when he wakes up in the morning he wants to be free!

10 November 2009

Eight weeks!

Tuesday was the first full stay at home day for Jeremy for nearly 3 months.

He had quite a few naps, as well as helping Mummy bake a special surprise for Stephanie. They managed to quickly make and bake some cinnamon swirls in the time it took for Baba to walk to school, nag Stephanie to go back to her classroom to get some new home reading books, and carry her all the way home.

Monday, November 9, 2009

9 November 2009


Jeremy had a quick checkup at hospital clinic today - his first pilgrimage to Westmead as an outpatient in almost 3 months! His blood counts are good, but he needs to eat and drink much more.

We were pleased that some local parks were deserted this afternoon, so he could have a fun time playing outside!

Sunday, November 8, 2009

8 November 2009


Hooray! Jeremy was finally discharged this morning after 84 days straight in hospital! He is very pleased to be back sleeping in his own bed after so long! And we are thrilled that he has reached another milestone in his long journey towards healing and recovery.

No more night-time obs (temperature, blood pressure, oxygen saturation and pulse) every 4 hours (or every 2 hours if febrile)! No more 5am bloods! No more drips beeping and nurse call buttons going ding-dong!

Jeremy has not had any fevers since Friday. The doctors told us that his recent fevers (and accompanying pin-prick rash all over his body) were caused by the GVHD (Graft Versus Host Disease) resurfacing because they had tapered the anti-rejection drugs too quickly. The doctors are pleased to see the GVHD (because of the Graft Versus Leukaemia effect) - they have recalculated his dose of anti-rejection drugs, and have put him on steroids to deal with the rash.

We have set up a Kangaroo Pump in his bedroom so that we can run his nasogastric feeds overnight, and will need to set up a special area for all his medical paraphernalia!

Jeremy will go back to hospital clinic 3 days a week for monitoring. Otherwise, he will be in isolation at home until his immune system matures (which could take up to 6 months or more) - no crowded places, no shops, no restaurants, no preschool, no church, and definitely no sick people!

Saturday, November 7, 2009

7 November 2009


Jeremy had no fever today, and was excited to be allowed out on Gate Pass between antibiotics! At home he was happy to have some bites of couscous, nashi and papaya!

Friday, November 6, 2009

6 November 2009


Jeremy was afebrile overnight, but his temperatures went over 38 degrees this morning and came back down again this afternoon with Panadol.

After a long morning nap, he did some painting and even wanted to eat a few bites of apple, pear and weetbix!

Thursday, November 5, 2009

5 November 2009


An immensely disappointing day!

The doctors told us this morning that Jeremy could be discharged today! They are happy for him to be at home (in isolation for up to 6 months because of his immature immune system), and to go to hospital clinic on Mondays, Wednesdays and Fridays. This morning he had a farewell play with his dinosaurs, and we packed up all our belongings.

A few weeks ago, we were quite surprised and shocked when the doctors started talking about discharge, because we had expected to be in hospital for months (and thought we were being optimistic if Jeremy could be home for Christmas!). But it seems that he has done very well in hospital - and as his blood electrolyte issues and nasogastric feed problems have been pretty much resolved, he can be an outpatient again! To God be all the praise and glory for bringing our little boy safely through his bone marrow transplant, and for His mighty healing hand!

We had just collected our big paper bag of discharge medicines, and were about to start taking our things to the car when ...


He felt very warm while we were getting him ready to leave, so we took his temperature and it was 38.3 degrees! To say that we were all very upset is an understatement!

Nurses and doctors were summoned, blood cultures were taken, and antibiotics were started.

However, we are thankful that it happened before he was discharged - otherwise, we would have had to come back to hospital and go through Emergency to be re-admitted. We later found out that Jeremy would probably also have lost his room in Camperdown Ward, and would have been sent to another ward - for this we are also thankful! And we know that everything happens in God's perfect timing, and that He is in control of this situation.

Wednesday, November 4, 2009

4 November 2009


This morning Jeremy had his second transfusion of immunoglobulin (antibodies made by the body's immune system), and during the transfusion he spiked a fever! However, as he had done the same during his first transfusion of immunoglobulin in September, the doctors think that it is just the way his body reacts to this blood product! Nevertheless, blood cultures were taken in case the fever was caused by an infection instead ...

This afternoon Jeremy had a red blood cell transfusion. His recent blood results show that his platelet counts have recovered by themselves, and the last time that he needed a platelet transfusion was a week and a half ago! Usually, the platelets are the last to recover, but his new bone marrow seems to have decided to make platelets first instead of red blood cells!

Jeremy spent most of the day napping, and then wanted to give his sharp teeth dinosaurs a bubble bath before dinner!

Tuesday, November 3, 2009

3 November 2009

7 weeks today!

Before Jeremy came home on Gate Pass this morning, the doctor told us some wonderful news! Jeremy's Day 30 special blood results have come back, and they are all donor blood! This means that his new bone marrow has officially engrafted! Although we had suspected this because his body had started making white blood cells, the blood results are proof that it is the new bone marrow working (and not a recovery of his own bone marrow). Thanks to all who prayed about this for us!

The doctor has also scheduled Jeremy's first post-transplant bone marrow aspirate for Monday 16 November - we are hoping and praying that the results of this bone marrow aspirate will show absolutely no leukaemia cells. Jeremy will have to have regular bone marrow aspirates over the next year or so, to check that the leukaemia has not come back.

Monday, November 2, 2009

2 November 2009


Another happy day out on Gate Pass!

Sunday, November 1, 2009

1 November 2009


Thank God for another Gate Pass today! Jeremy had a great day at home, and once again tried to eat at mealtimes but still only managed nibbles of food - please continue to pray that he will eat properly soon!

However ...

after being put to bed tonight, he vomited up his nasogastric tube. He was very distressed, and wanted BaBa to drive out to hospital to hold him while the nurse put his tube back in! But our brave little man was so good, and now he is asleep with a new tube in his tummy.

FYI - the pink end is where the medications and feeds go in, and the tape is where the tube was stuck to his face.