31 December 2009

T+107 - New Years Eve

What a year this has been! It has been one huge emotional roller coaster, and we are so thankful for the miracle of Jeremy's bone marrow transplant. It is truly amazing how such a small amount of blood (donated umbilical cord blood, which was about 100mls including all the preservation chemicals) was able to engraft and grow into bone marrow throughout the whole of Jeremy's body. We also have memories of a synthetic/metallic creamed corn smell from those chemicals. It is awesome because there were so many factors and issues where the doctors and nurses simply did not know what was happening, but God's mighty hand worked through them to help our little boy.

There is a long journey ahead, but we are sustained and encouraged so far. We were also saddened to hear of close friends who were also diagnosed with cancer, and full of joy that some are now in remission. We have been strengthened by the constant prayers of our friends and also of those who we do not know, yet who have been faithfully praying for Jeremy and our family. And we know that we need to live one day at a time, being thankful for our blessings, enjoying each moment with our children, trusting in our good God, and looking forward to a time where there will be no more sickness or sadness or pain.

30 December 2009

T+106

Today was our week 15 visit to hospital, and the last scheduled visit for 2009. We are thankful that Jeremy's counts were good, his weight is gradually increasing (+400gms compared with 2 weeks ago), and the doctor was pleased with his progress.

In fact, the doctor was happy for us to change his nasogastric feed patterns to every alternate evening (the objective is to attempt to get him to eat more on his own). We were also glad to hear that the doctor is considering allowing Jeremy to start kindergarten at our local primary school in 2010 - depending on how his immune system is going. Jeremy would be thrilled to be able to go to the same school as Stephanie (I can just see him sticking to her like a limpet mine during recess and lunch!)

In other news, Jeremy accidentally copped an elbow to the face this afternoon while play wrestling. He cried a little, but he didn't want his ice-pack for very long, and forgot all about it shortly afterwards. Thankfully it has cleared up tonight.

29 December 2009

T+105 or 15 weeks!

Jeremy had a busy morning teaching KonKon and PawPaw how to play Supermario Bros. He drank several glasses of strawberry soy milk today, but his food intake was minimal - soy icecream for breakfast, 1/2 piece of bread with ham for lunch, and a few mouthfuls of udon and pork mince for dinner.

28 December 2009

T+104

Jeremy was given water again last night, instead of nasogastric feeds, but his appetite only picked up at dinnertime when he ate a bowl of udon and mince pork.

Just before dinner, we had a bit of a scare when we noticed that Jeremy felt hot and that his cheeks were quite flushed. We took his temperature, and it registered at 37.8 degrees! However, then we looked at his sibling, whose cheeks were also red (but no elevated temperature) and figured out that it had been caused by them standing too close to the TV and getting over-excited while playing Supermario Bros! Despite our constant warnings to stand back, in their enthusiasm, they keep edging closer and closer to the screen until they are almost touching it!

Thankfully, after dinner, Jeremy's temperature had gone down to 37.2 degrees - and now they have to stand behind a temporary barrier when they play Wii!

27 December 2009

T+103

Last night we ran water instead of nasogastric feeds through Jeremy's tube, but it did not seem to have that much impact on his appetite today. He made a big show of saying "delicious chicken sausages" and "thank you BaBa for cooking them", but then ate less than 2 little sausages for lunch. The only things that he was interested in eating at dinnertime were fresh lychees!

26 December 2009

T+102

Boxing Day - 2 hours delayed!

It was a strange day, where everything was running about 2 hours late. Breakfast was late, lunch was later, dinner and bedtime were also running behind schedule. It was totally bizzare, but probably a consequence of a busy Christmas day and night.

We might not get to go outside, but our hands are full trying to keep our little ones amused.

25 December 2009

T+101 Christmas Day

Our Christmas present this year was to be able to spend the day at home with Jeremy. We are truly thankful for the support and prayers that we have received this year.

Happy Christmas!

We praise God that we are able to wish you a happy Christmas from the 4 of us!

Thank you for your faithful prayers for Jeremy and our family - our God is a great God and He has been so merciful to us!

May you and your family have a joyful Christmas remembering how God has shown mercy to all people - through the most important gift of all, His Son Jesus Christ!

For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life - John 3:16

24 December 2009

T+100

Thankfully it was another fine morning, so Stephanie and Jeremy could have a play at Just-A-Ship Park! They took turns driving to the North Pole and Rainbow Road.

This evening, they were excited to go for a walk to meet BaBa on his way home from the train station.

And now two little children, who have been eagerly awaiting tomorrow morning, are fast asleep!

23 December 2009

T+99

Wednesday is currently the nominated day of Jeremy's weekly checkup at hospital clinic. Today was the first opportunity for a healthy (non-coughing) Stephanie to accompany Jeremy on this weekly excursion out of the house. The children were pleased and excited at the opportunity to go out together. They were even more delighted when they received a pretty gingerbread house (which they can't eat) and some toys from the staff at clinic!

We continue to thank God that the doctor is happy with Jeremy's blood counts and progress. The results of last week's immune function test showed that Jeremy's immunity is slowly improving. It will take at least another 3 months for it to recover enough for him to have all his childhood immunisations repeated, so at the moment he is still much at risk of easily catching infections/viruses and needs to remain at home in isolation.

We were glad that Jeremy's blood electrolyte levels were good today, because we had given him water last night instead of nasogastric feeds and did not know how it would affect his levels. The doctor suggested that we do the same this week (ie. replace his nasogastric feeds with water for 2 nights) and again watch to see whether his appetite increases.

In this regard, he seems to be asking for food more often and actually eating what he asks for. On the menu again was white bread with ham (no crusts), "crunchy" and lebanese cucumber!

22 December 2009

T+98 (14 weeks)

Stephanie and Jeremy had an early morning play at the school playground - these days the sun is hot by 9am, so we are trying to go out earlier and earlier. After a refreshing iceblock (or two!), they decided to move all the beanbags, blankets and cushions into Jeremy's bedroom so they could have a pretend picnic. Then they did some baking for EeEe's lunch - pastries, cinnamon swirls and banana slice.

Despite the active participation in the cooking, Jeremy decided that he was only interested in eating white bread with ham (without the crusts) - today he ate it for breakfast, lunch and dinner!

21 December 2009

T+97

Yesterday evening we heard Jeremy calling out "Mum! Mum!", so we went into his room to find that his nasogastric tube had leaked onto his pillow and sheets. His tube must have got caught somehow while he was sleeping, but fortunately it hadn't leaked onto the floor. We are thankful that this was the first time that it had leaked since Jeremy has been home - when he was in hospital, it had been common for his tube to disconnect from his nasogastric feed bag, and for us to wake up in the middle of the night with his feeds dripping down the side of his bed and making big puddles on the floor!

This morning Stephanie and Jeremy had an energetic game of hide and seek at Big Swing Park, where there are many tall trees to hide behind and lots of space to run around and chase each other.

Jeremy's appetite was a little better today - almost 2 slices of bread with ham (minus the crusts) for lunch, and 3 slices of bread with ham (minus the crusts) and a lebanese cucumber for dinner!

20 December 2009

T+96

Last night we ran water instead of his nasogastric feeds through his tube, to see if this would increase Jeremy's appetite during the day. When he woke up in the morning, he said he was hungry - usually he has no interest at all in eating breakfast! During the day, he also often told us that he was hungry - but when we put food in front of him, he still did not eat all that much. However, at dinnertime he gobbled up lots of pork ("Hurry up and cut it for me, Mummy! Only the white bits, Mummy!").

The dietician suggested that we stop his nasogastric feeds for 2 nights this week, and then see if his appetite picks up and if his weight remains stable. We will give him his nasogastric feeds tonight, and then try water again in a few nights' time.

However, because we put plain water down his tube, it basically went straight through him (whereas the nasogastric feeds have to be processed in his stomach for a while) - this meant that we were more sleep-deprived today than usual, because Jeremy needed to use the bottle more often!

19 December 2009

T+95

It was a very excited little boy who helped BaBa wash the car this morning. Jeremy loves to push the soapy sponge around the car body, and today he was allowed to hold the hose and rinse off the suds (getting us wet in the process!). He often asks us when he can help wash the car, and we were glad that it was a fine morning so that he could do so!

Thank God that Stephanie has recovered from her virus - her barking cough has transformed into an ordinary cough - so we decided to bring her home this afternoon. It was good for us all to be able to eat dinner together again.

18 December 2009

T+94

Jeremy's next bone marrow aspirate (4 months post transplant) has been scheduled for Wednesday 20 January 2010. Please pray that this will show that his body is still free of leukaemia, and that the leukaemia will never come back!

17 December 2009

T+93

Today we managed to interest Jeremy in some "crunchy" (pork crackling). The funny thing was that he turned his nose up at bacon, complaining that it was "too salty", but the crackling was even more salty and he ate that without complaining.

16 December 2009

T+92

Today was the last day of the school year for Stephanie. She woke up with a bit of a barking cough and a sore throat, but no temperature. DrKonKon kindly came by to check on the little princess in the afternoon, who was then "banished" to PawPaw KonKon's place. She was very happy to be there, as there is plenty of television for her to watch. We are very thankful that PawPaw and KonKon are willing and able to take Stephanie at such short notice.

Thankfully, Jeremy seems to have avoided catching the worst of it - he only has a slight cough, and has not had a sore throat. The doctors are still happy with his progress, and they took blood for his immune function test today (The results will not be known for at least another week). As Jeremy still does not feel like eating, we consulted with the dietician. We have been reassured that this is not abnormal for oncology kids, and gave us some suggestions/advice.

15 December 2009

Praise God that it's 3 months (or 13 weeks) post transplant!

Still not much improvement on his appetite - just ice blocks and strawberry flavoured soy milk drinks again, and less of them today.

But we are so thankful for a happy, cheeky, active little boy ... and for nasogastric tubes!

14 December 2009

T+90

Today's intake was more of the same - ice blocks and strawberry flavoured soy milk!

13 December 2009

T+89

Jeremy declined to partake of any nutritious foods, preferring to spend his energy eating ice blocks again. However, we did manage to interest him in drinking soy milk today when we grabbed his attention with some strawberry flavoured drink powder. They both drank 2 glasses of soy milk in double quick time!

He was a bit warmer than usual today, but he was still very happy and keen on doing his online farming and fishing, as well as ordering people to play wii with him.

Jeremy's nasogastric tube was almost ripped out of his nose when he was play wrestling with us, but he was very good about it and calmly drank a glass of water while we pushed it back into his nostril. Thankfully, when we tested it with litmus paper, we found that the end of his tube is back in his stomach where it should be!

12 December 2009

T+88

We are still waiting patiently for Jeremy's appetite to return. He does occasionally eat some small portions of fruit. Today he had a craving for ice blocks and ate nearly 6 of them, so at least there was some sugar, water and colouring going into him.

We had another early morning pilgrimage to Big Swing Park - unfortunately, one of the big swings was broken, so they had to take turns. It was interesting to see the park slowly fill up with some adults seeking a place to lie in the sun, read a book, or just sleep on a park bench. Eventually an overworked grandmother came with a horde of children, so it was time to go home.

11 December 2009

T+87

Jeremy's hair has been slowly growing longer, at the moment it is nice and soft. When we told Jeremy that his hair is growing back and that he will need a haircut soon, he said NO!

His eyebrows have also grown back thicker, but the doctor said that they should thin back to "normal" now that he has stopped his anti-rejection drugs. His eyelashes are much thicker and longer than before his transplant! (Though that will also thin out with eyebrows).

Here's a picture of the gradual hair growth over a month.

10 December 2009

T+86

Jeremy had fun today unlocking Mario Kart characters and courses. Initially he wanted BaBa to do it all for him - but when BaBa had to go to work, he decided to have a go and found that he could do it all by himself!

9 December 2009

T+85

Jeremy went to hospital clinic for a checkup today. His blood counts are stable, and the doctor is amazed at how well Jeremy looks. The doctor reminded us that the average length of hospital admission for an unrelated cord blood transplant is 12 weeks - praise God that Jeremy is recovering so quickly!

Jeremy was keen to get involved in making meatballs for dinner - his job was first to select, then to shake herbs and spices into a bowl, which he did very enthusiastically. However, once again, when he was served the finished product, he could only manage a tiny nibble.

Ken and I are still sleep-deprived - sometimes it feels like we have a newborn baby again! Jeremy's nasogastric feeds are running overnight, so his body is processing nearly a litre of fluids while he is asleep. As he is connected to his Kangaroo Pump, he is unable to take himself to the toilet at nights. Although he wears a nappy at nighttime, he doesn't want to wet his nappy and calls out to Mummy - who comes running with a bottle so that he can relieve himself. This happens at least 3 times every night!

And the little man gets very upset if BaBa appears in the middle of the night instead of Mummy ...

8 December 2009

12 weeks!

Early this morning, Jeremy went to Rocky Park for the first time. He was excited to see the winding footpaths, and then started running and yelling "Chase me! Chase me!". The fun was cut short when a mother arrived with her 2 children and her unleashed dog - a) what was dog doing off its leash, and b) what was dog doing inside a children's playground?

7 December 2009

T+83

Jeremy is starting to learn how to ride a bike - indoors! He gets all dressed up in knee pads, elbow pads and bike helmet, then pedals from the front door to the kitchen and back with Mummy holding him up!

6 December 2009

T+82

Today was Jeremy's last dose of anti-rejection drugs. He is quite pleased about that, because apparently the soft-gel capsules have a foul-tasting coating - but he much preferred to swallow the capsules rather than have it as an oral liquid (which also tastes disgusting, according to the doctors and nurses). If he had chosen the oral liquid, it would have had to be via his mouth because it could not be put down his nasogastric tube (unlike all his other oral liquid medications which can go in his tube).

So now he is just on anti-fungals, anti-virals and Bactrim (used as a preventive mediciation for pneumonia).

5 December 2009

T+81

This morning we went out early (8am!) to the Big Swing Park - it was relatively deserted and the equipment was not wet with dew! Stephanie and Jeremy were delighted to play on the big swings, laugh themselves silly on the twirly spinners and play chasings around the stone statues.

4 December 2009

T+80

Jeremy has been playing on the computers, and taken an interest in some of the facebook games that Stephanie has been playing.

Food is not currently on his "radar", however, he now appears to be happier to drink water using his mouth. We aim to get 1.5L of fluids into Jeremy each day - Overnight feeds account for ~1L, which means 500ml to be done during the day.

When Jeremy is reluctant to drink orally, we have to use the pump to put it down his nasogastric tube. The overnight feeds run at 65ml per hour (very slowly), though we can run plain water through at around 200-250ml per hour (depends on the boy and his stomach). That means a small cup of 100ml would take ~30mins of being tied up to the machine. If it goes in too quickly, it will come back out very quickly, and we get an upset boy as a bonus.

Anyway, we are very pleased that he is happier to drink from a cup and therefore rely less on the pump. We are just waiting for appetite to return.

I noticed that today is T+80 - You could go around the world in eighty days...

3 December 2009

T+79

Today was a quiet day at home for Jeremy.

Breakfast was a non-event for him. He sat down, and looked at the rest of us eating our breakfast and then announced that his tummy was full. He took his medicine without protest, and then wanted to leave the table.

He is still a very happy boy, and for this we are truly thankful.

2 December 2009

T+78

Jeremy went to hospital clinic today. Praise God that the doctor is happy with Jeremy's progress, and has started reducing his prophylatic or preventive medications. His blood counts have been OK, and he hasn't needed a transfusion for almost a month now. We feel so blessed that Jeremy's recovery seems to be going well.

Jeremy didn't each much today - a piece of nectarine for breakfast and a few strips of seaweed for lunch - except for dinnertime, when he ordered and ate a fresh batch of homemade chicken sushi.

1 December 2009

11 weeks!

Today was Ken's first day back at work for a long time. We are very thankful that his work has been so compassionate and generous in allowing him to take so much leave so that he could look after Jeremy (and Stephanie) before and after his transplant!

Jeremy had a busy morning playing computer, marble race, playdoh cooking, chasings, and baking ham swirls and cinnamon swirls to eat for lunch - unfortunately, he only nibbled away at his food at lunchtime. However, he was agreeable to drinking water today (instead of having it down his nasogastric tube) as he wanted to run around the house yelling "Chase me! Can't catch me!".

He was more enthusiastic about eating homemade sushi for dinner (nori, rice and cooked chicken), and afterwards he wanted to stay up and wait for BaBa to come home so he could eat some bites of BaBa's dinner too!

30 November 2009

T+76

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.

29 November 2009

T+75

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

T+74

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.

27 November 2009

T+73

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).

26 November 2009

T+72

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!

25 November 2009

T+71

Discharged!

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.

23 November 2009

T+69

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.

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

T+68

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!).

21 November 2009

T+67

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.

20 November 2009

T+66

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 :-)

19 November 2009

T+65

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

T+64

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!

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.

16 November 2009

T+62

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!

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!

14 November 2009

T+60

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.

13 November 2009

T+59

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.

12 November 2009

T+58

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).

11 November 2009

T+57

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.

9 November 2009

T+55

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!

8 November 2009

T+54 AND JEREMY IS HOME!!!

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!

7 November 2009

T+53

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!

6 November 2009

T+52

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!

5 November 2009

T+51

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 ...

JEREMY SPIKED A FEVER!!!!!!!!

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.

4 November 2009

T+50

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!

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.

2 November 2009

T+48

Another happy day out on Gate Pass!

1 November 2009

T+47

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.

31 October 2009

T+46

We are thankful that Jeremy was able to come home on Gate Pass, even though his blood electrolyte levels and nasogastric feeds still need work! He did try to eat breakfast, lunch and dinner today, but only managed a mouthful each time before saying he was full.

However, we are pleased that he has decided that it is quicker to drink his water requirements from a cup, rather than have to sit still while we put it very slowly down his nasogastric tube!

30 October 2009

T+45

Jeremy stayed at hospital today, because his blood electrolyte levels and nasogastric feeds have still not been sorted out.

One of the problems is that there are only 3 dairy-free soy-based nasogastric feeds that he could use because of his allergies. This problem would be solved if he started eating properly again, but at the moment it is rare if he feels like eating and then he will only nibble at food (otherwise, nothing goes in his mouth!). His appetite has gone, thanks to all of the chemo and radiation that he had in the past and the medications that he is currently taking. Please pray that he will want to eat and that he will eat SOON!

Jeremy had a fun time making playdoh with the play therapist - they made aqua blue playdoh, white playdoh with sparkly stars, and a terrific mess of flour all over his bed!

29 October 2009

T+44

Jeremy got to come home in the afternoon on Gate Pass. We had a chat with the dietician today, and he will be trying a new feed/formula through his nasogastric tube tonight. Hopefully his digestive system does not complain about this new feed.

28 October 2009

T+43

Hooray! Jeremy was allowed home on Gate Pass, on condition that we put 4 x 150ml water down his nasogastric tube - we were 20ml short when we came back to hospital this evening!

No diarrhea (actually no poo!) with his 50% Isosource 50% Neocate nasogastric feed mix, so he will continue with it tonight.

27 October 2009

6 weeks today!

Jeremy spent the day at hospital washing his dinosaurs and playing playstation, while the doctors and dietician continued to work on his blood electrolyte balance. He was glad to have a surprise visit from BaBa, and wanted to share a tuna and toast sandwich with him for lunch!

Since switching back to Neocate for his nasogastric feeds, his poo problems have almost been resolved - tonight he is going to try 50% Neocate and 50% Isosource, and hopefully this has no adverse effect on his gut!

We are thankful that his throat swab from Saturday came back clear, which means his cough is not caused by a bacterial or fungal infection. Although he is still coughing, it seems to be less each day.

26 October 2009

T+41

Jeremy had a quiet day at hospital, playing with toys and watching DVDs, while the doctors tried to balance his blood electrolyte levels. He had urine and blood tests to see what is happening in his system, and the doctors have been changing both his nasogastric feeds and his IV fluids to hopefully bring his levels back to normal.

25 October 2009

T+40

Jeremy was pleased to go home on another Gate Pass today, and wanted to cook and eat baked chicken wings. He made a delicious flour mix to coat the chicken wings using random shakes of whatever spices and herbs he found in the cupboard, but unfortunately only took a few bites of the cooked product.

We are still encouraging him to drink more, and also working out how much water we are able to put down his nasogatric tube at home - this afternoon we overdid it, causing him to vomit the water back out!

When he gets back to hospital at nights, the nurses take some blood from his central line and send it to the lab for testing. He also has blood taken in the early hours of the morning. Over the past few days, his electrolyte levels in his blood have not been normal and the doctors are adjusting and readjusting his overnight fluids (IV down his central line) to try to correct them.

24 October 2009

T+39

After an early morning platelet transfusion, Jeremy was subjected to a throat swab (as the doctors are concerned about his lingering dry cough). Said throat swab caused him to gag and vomit - over his bed and Mummy's jeans! However, after everything had been cleaned up, he was allowed to go home on Gate Pass.

Since his overnight nasogastric feeds were changed from Neocate to Isosource (which has more calories per ml) on Thursday night, he has experienced bad diarrhea during the daytime. The doctors have switched him back to Neocate tonight, and hopefully this will resolve his poo problems!

23 October 2009

T+38

We are thankful for another Gate Pass today! We still have much work to do in relation to his fluid intake - however, in addition to what we can persuade him to drink, we are able to supplement that with water down his nasogastric tube.

Jeremy's hair is slowly growing back - his head is no longer "shiny bald", but soft stubble!

22 October 2009

T+37

Today was the official Windows 7 release day - not that it made any difference whatsoever to the little man (we are still running Vista). Besides, if you were at hospital and you asked Jeremy "Where do you want to go today?" - he'd probably say "home".

Anyway, Jeremy's counts were okay today, and he did not require blood products. He was allowed home today on the proviso that he drinks enough fluid (he has not been drinking much lately). He made a good effort, with the assistance of Sipahh straws.

21 October 2009

T+36

After a much-needed platelet transfusion and red blood cell transfusion, Jeremy was allowed out on Gate Pass this afternoon!

His nasogastric feeds have been concentrated down from 20 hours to 12 hours, and we are trying to encourage Jeremy to eat and (more importantly) to drink more so he doesn't need fluids via the drip.

20 October 2009

5 Weeks!!

Thank God for another Gate Pass today!

19 October 2009

T+34

The bone marrow transplant team are happy with Jeremy's progress, and have stopped his antibiotics because he was fever-free for most of yesterday. They have continued to change his medications to oral format where possible, such that tonight he was only connected up to his nasogastric feeds and no drip at all!

We are thankful that Jeremy was able to come home on a Gate Pass today. He was pleased to be home and be able to get involved in preparing dinner (not that he ate much!).

18 October 2009

T+33

Jeremy's fever breached 39 degrees this morning. Thankfully, he responded well to panadol, and it dropped back down into the 37s later in the morning and he stayed fever free for the rest of the day.

We had some good news today. The doctor came in and told us that the preliminary results of the skin biopsy indicate that Jeremy's rash is consistent with GVHD, and in this instance, they would label this as grade 1 GVHD, which they would not usually treat.

They capped off Jeremy's lines today for a few hours, so he cheekily played hide and seek with Dr KonKon in his room. Stephanie came with Dr KonKon to visit and play, and they also fulfilled a very important objective of restocking the soy ice cream!

17 October 2009

T+32

Jeremy had a fever at 6:30am this morning. This meant no gate pass! A blood culture was taken, and they started on first line antibiotics. His temperature was up again (over 38 degrees) at 4pm, coming down with some panadol, but by 8pm had breached 38 degrees again.

Although Jeremy was greatly disappointed, we are thankful that he was still energetic and managed to watch some TV, DVDs, as well as play on the playstation. We continue to be thankful that his white cell blood counts have improved each day (the growth is being boosted by the GCSF). We are still waiting for the platelets and haemoglobin counts to recover, as it takes longer for the bone marrow to recover/start producing them. He had a platelet transfusion today, and it is possible that he might require red blood cells tomorrow or Monday.

16 October 2009

T+31

Praise God! For today we had a wonderful surprise when the doctors told us that Jeremy could go home for a few hours on a Gate Pass. However, it was a bit touch-and-go before Gate Pass time, because Jeremy's temperatures were hovering just under 38 degrees! But God answered our prayers and kept him from spiking a fever - and it was such a joy to be able to eat dinner together as a family, and to watch him and Stephanie playing so happily!

Over the past couple of days, some of Jeremy's medications have changed from being IV (in the drip) to oral (down his nasogastric tube). Today, the nurses were very kind to arrange to have the concentration of his Cyclosporin (anti-rejection drug) altered so that it could be given over 18 hours instead of 24 hours. Thus, he was allowed to be unhooked for a glorious 6 hours and come home on a Gate Pass. Jeremy was so thrilled to be drip-free and out of his isolation room - he has been stuck in a room for the last 32 days!

Provided Jeremy stays fever free, he should be able to come home for a few hours each day over the weekend. update:Sat AM - Fever at 6.30am! No coming out today!

Please be aware that his immune system is still very weak - he was required to wear a face mask upon leaving his room. He is not allowed to play in the ward, nor mingle with others. When it gets stronger, he will need to have the childhood vaccinations all over again as those vaccinations have been deleted from his system (rm -rf).

15 October 2009

T+30 (One month today!)

The dermatologist came to do a skin biopsy this morning. Jeremy was a very brave boy, and had to lay very still while they carved out a skin sample from his foot. He was given some cream to numb the area, then some local anaesthetic as well as happy gas. He now has his foot bandaged, and the dressing will be changed daily by the nurses. We anticipate that the results won't be available until next week.

After his biopsy, Dr KonKon and Stephanie arrived. They were able to play together with some lego zoo pieces and (of course!) dinosaurs!

Jeremy has managed to start eating again, and today it seems his eyes were bigger than his stomach. He ate toast and tuna at lunch, probably too much, as he ended up regurgitating some of it.

It seems that after his spew, his cough started getting worse. He still has the occasional sniffle. Thank you to everyone for praying for Jeremy daily. Please also continue to pray that his cough and nose clear up quickly, and that he does not have a respiratory/viral illness.

14 October 2009

T+29

The dermatologist came and examined Jeremy's rash, which is all over his body. However, he has ordered a skin biopsy for tomorrow before he makes a definite diagnosis. Apparently a skin biopsy will involve Emla cream, as well as an injection of local anaesthetic and some happy gas - please pray that Jeremy will be a brave little boy tomorrow!

Jeremy had another platelet transfusion today - at the moment, he seems to be needing a top-up of platelets every second day.

Today was Siblings Day - a special event run by the social work department for siblings of children with long-term illnesses. Stephanie, and about 20 other children her age, went on a tour of the hospital, played games together, and were entertained by the Clown Doctors and a puppet show. It was an exciting day for them to meet other siblings and learn about how the hospital works.

13 October 2009

Today is 4 weeks post transplant!

Jeremy had a busy morning playing and watching. His appetite is slowly coming back, and over the past couple of days he has been eating vanilla soy icecream and a little bit of toast with jam (minus the crusts!). This afternoon he figured out how to play a Dora game on the playstation, and was able to save the mermaid kingdom from the mean octopus!

We are very thankful that Jeremy's white cell count is still improving (slowly each day). He has not had a high temperature for a couple of days, so the doctors stopped Jeremy's antibiotics today. However, he is still on anti-fungal, anti-viral, anti-nausea and anti-rejection drugs. We waited all day yesterday and today for the dermatologist to come and inspect Jeremy's rash - maybe he or she will make an appearance tomorrow!

12 October 2009

T+27

Jeremy's cough and sniffle have almost disappeared, and the doctors are not as concerned that he might have a respiratory illness. Thanks to all who prayed about this for us!

The doctors are now focusing their attention on his rash, and have asked the dermatologist to come and have a look at it. But otherwise, the doctors are pleased that he is clinically well.

It's curious, but Jeremy has those tiny white spots on his nose and cheeks just like a newborn baby!

Jeremy spent a long time with the play therapist today, and then had a fun drum session with the music therapist. He also enjoyed spending time with Stephanie, before he was drugged out with Phenergan (his pre-medication) for his platelet transfusion. Tonight he had a red blood cell transfusion.

11 October 2009

T+26

Jeremy's cough and sniffle are slowly going away, but he has a rash which is spreading over his body and is very itchy. He is currently on antihistamines, and hopefully these will deal with the rash.

He had a good time this afternoon with his family and GooPaw, playing some board games and having fights between the "leaf eaters" and the "sharp teeth" toy dinosaurs!

Sculpture by the B!

Dinosaurs from The Land Before Time
Sculptures by BaBa
Commissioned by Jeremy
Medium - Crayola Model Magic!

10 October 2009

T+25

Jeremy had a fitful sleep last night. It was the first night that he has not had any morphine infusing as baseline pain relief. Hopefully, he will be able to sleep better tonight, without requiring any shots of morphine. This has been a gradual process of downgrading his morphine levels/weaning him off the drug.

Tonight, when they change the lines, they will be taking down the TPN as well. They have been steadily increasing his nasogastric feeds since reinsertion, and it should be back at full volume tonight, so this will allow him to get off the intravenous feeds (TPN). If he manages to stay off the TPN, then the triple pump will be replaced with a single pump (his IV stand is then going to get smaller!). Less machines and less cumbersome to move around.

The BMT team came by this morning, and were happy with his progress, but are still concerned about his cough and runny nose. Jeremy no longer coughs when he is asleep, but does have a bit of a cough when he wakes up. Likewise, he tends to do a lot more sniffling as soon as he wakes up. We have politely pointed out that the sniffles only appeared after the nasogastric tube was inserted, but the doctors were unwilling to rule out a viral infection, even after their tests were done. Please continue to pray that his cough and runny nose go away quickly, and that he does not have a respiratory/viral illness.

Jeremy's white cell counts have been slowly improving each day, but there is still a long way to go.

9 October 2009

T+24

Jeremy's cough and nose seem to be better today and although he is still on the waiting list, there was no vacancy in Variety Ward :)

Bravery beads

These are Jeremy's bravery beads (click on the picture to see it larger). Thanks to Cure Our Kids, Jeremy collects a bead each time he has a procedure. For example, the red beads are for blood transfusions, the various cat beads are for tests and scans (eg. X-rays, fungograms), and the big pretty bead on the top right is for his bone marrow transplant - click here for more information. He is up to his third strand, and he is keen to thread on his beads all by himself!

8 October 2009

T+23

Thank God that the doctors are happy with Jeremy's progress. We had our weekly meeting with the bone marrow transplant team today, and they are pleased that his new bone marrow has started to engraft.

However, they were a bit concerned that his persistent cough and a recent sniffle may be symptoms of a respiratory illness. If his "runny nose" has not been caused by the reinsertion of the nasogastric tube, but is actually a respiratory symptom, he will be moved out of Camperdown Ward to Variety Ward. Variety Ward is where the oncology patients with infectious illnesses go, because it has special isolation rooms with air conditioning that vents straight outside. We were very upset when they told us that we were going to move today (even though he had not yet tested positive to a respiratory illness), but fortunately there was not a spare isolation room in Variety Ward!

He also spiked a fever this afternoon, and was feeling quite out of sorts.

Please pray that he does not have a respiratory illness and that his cough and nose clear up ASAP! And please pray that God's mighty healing hand will continue to protect and look after Jeremy. Thank you.

7 October 2009

T+22

Forgot to mention that over the long weekend, they decided to start reducing Jeremy's background morphine levels. As he has been on morphine for about 3 weeks, they are reducing the levels gradually. Sometimes he needs a few "boosts", especially when they did their thing with the nasogastric tube.

His mouth still has some sores, but the doctor told us they have been there for a little while and are getting better. After the tube was back in yesterday, the feeds have restarted, and hopefully this kick starts his stomach and gets him eating again. His cough is still keeping him (and us!) awake at nights.

Today, he was happy to get out of bed and play at a little table and chair in his room, where he put generous amounts of paint on a plaster dinosaur and 2 dinosaur pictures. He then had a good time with the play therapist - colourful painting with marbles, and making shapes out of special clay. And he also wanted to practice his playstation car rallying skills!

6 October 2009

Today is 3 weeks post transplant!

We have Great News today! Jeremy's blood counts are showing white blood cells, and they have detected some neutrophils in his count as well (these are white cells that help fight infections!). We are so thankful and happy to see these first signs of bone marrow engraftment and recovery. We are still praying that the engraftment is successful and that there are no more complications.

Otherwise, Jeremy did not have the happiest of days. The doctors decided that the nasogastric tube had to go back in, so after his platelet transfusion this morning, three nurses came in to help get the deed done. But he was so very brave about it, and did not make too much protest as it was being inserted. Imagine how you would like a tube being threaded up one nostril, down the back of your mouth, down your throat and into your stomach!!

Since he had not had much to eat or drink, they were unable to test whether the tube was in the right place, so the portable xray machine was brought in. The placement was fine, so they should be restarting his feeds tonight.

5 October 2009

T+20

Jeremy was in a better mood today. He sat up and played some animal dominos, as well as some playstation (Rugrats and Colin Mcrae2). He had a good nap in the afternoon.

He is still a good boy taking his medicines, and even managed to eat some apple this morning (as well as last night).

Overnight he had a fever of 38.2 degrees, but thankfully his temperature dropped back down to normal range on its own. He still has a nasty cough, but his engraftment rashes on his arms and legs are gradually fading away (his cheeks are still quite rosy from the rash).

4 October 2009

T+19

Jeremy's cough is getting worse, and it started affecting his sleep last night. He started developing this cough after transplant, and it started getting worse over the past few days (since the tube came out). The doctors have already done chest x-rays and fungo-grams, which show his chect is clear, but the coughing is distressing for him (and tires him out). The explanation we are being given is that this coughing is due to the mucositis causing irritation in his throat.

Jeremy had a platelet transfusion today, and the pre-medication contributed to him having another sleepy day.

He has been a good boy and taken his medicines (coca cola assisted) and for the time being, they will hold off reinserting the nasogastric tube.

3 October 2009

T+18

Yesterday after suffering the trauma of vomiting up his nasogastric tube and having it hang out of his mouth, gagging on it, and just trying to pull at it, Jeremy decided to sleep. He slept most of the afternoon and evening, leaving me worried that he might have a disrupted sleep overnight. Thankfully, he had a good nights sleep, and our night nurse was very careful and minimised the number of times I was woken.

He was a good boy this morning and took his oral medicine. He had refused this last night, and this morning was basically his last chance at delaying the reinsertion of the nasogastric tube. Basically, if he won't take his oral medicine, they will reinsert the tube. Since he is taking the meds, then they will wait until the next time he requires platelets. If Jeremy has started to eat some foods and drink, then they might let him avoid having the tube reinserted. However, the medicines taste foul...

Today, Jeremy was happy to see his mummy, sister and grandfather. There was a short period of respite until had another trauma around lunchtime. One of his central line attachments came loose. There was a bit of blood leakage, and a period of discomfort as all of his lines were changed. Apparently, these 3-way "tap" connectors are prone to coming loose. Blood cultures were taken immediately, just as a precaution.

After his visitors departed, Jeremy decided to go back to sleep. Over the past few days, if he wasn't sleeping, he was probably watching a Land Before Time video :-)

2 October 2009

Jeremy had another platelet transfusion this morning. Unfortunately after that, Jeremy had a big spew and vomited out his nasogastric tube. He was most distressed with the tube hanging out his mouth, but has calmed down now and at least his face might not be so itchy from the tape. The doctors have not yet decided when to put the tube back down, and it will depend on how sore his mouth and throat are.

Here are some recent photos - the wonderful life-giving cord blood, Jeremy on his way back from his CT scan (fungogram), and his crazy drip poles!

1 October 2009

T+16

Praise God that the doctors are happy with Jeremy's progress! They told us that Jeremy's fevers and rash on his body have been caused by the new bone marrow beginning to engraft, and have started him on a short course of steroids. Since his first dose of steroids yesterday, he has been afebrile! Hopefully, the steroids will also make his rash disappear, as he was itchy today and spent the day in a Phenergan-induced sleep! And hopefully, some white blood cells will make their appearance soon!

30 September 2009

Although Jeremy still has high fevers and a puffy face, he is much brighter today than the past few days when he was having feverish naps for most of the day. He and the play therapist enjoyed playing with pink slime, and he has asked for orange slime for his next playtime!

29 September 2009

Today is 2 weeks post transplant!

This last week has been very tough for Jeremy. The high fevers continued today, and he had another platelet transfusion and red blood cell transfusion. Tonight he has 2 drip poles, 7 drips/pumps and 8 lines connected to him! Due to all these fluids going into him, his face is quite puffy from fluid retention and hopefully he can excrete the excess fluid soon. The results of yesterday's CT scan (fungogram) came back clear, so he doesn't have a fungal infection. However, he still does not have white blood cells yet ...

28 September 2009

Jeremy's high fevers continued throughout today, but thankfully his blood pressure remained stable. He still managed to sit up and play a game of Agitation (also known as Trouble) with the play therapist, and also to experiment with the electronic drum pad that the music therapist brought to his room!

As nothing has been grown from his blood cultures (thus indicating no bacterial infection), he had a CT scan (or fungogram) this afternoon to see if a fungal infection is causing his high fevers. However, the doctors are hoping that his high fevers mean that his new bone marrow is starting to engraft - and we are praying that this is the case! The proof will be if his blood counts over the next few days start to show the existence of some white blood cells.

27 September 2009

T+12

Jeremy vomited twice last night, and combined with all the rumblings in his stomach, prompted the nurses to discontinue his nasogastric feeds. He was placed on TPN, so all his nutritional requirements are delivered via IV. He does have a very large number of lines connected to him now, and I have been constantly asked to adjust his singlet and move his lines to make it more comfortable for him.


Jeremy appeared a lot better, and when I started up the laptop, he demanded to play some games. He played a while before asking me to help him, so we ended up playing 2 games together, then he decided he wanted to watch some of the Land Before Time videos. He watched 2 of these before falling asleep. During this time, his temperature dropped below 38 degrees!


After Mummy and Stephanie arrived, he brightened up and summoned enough energy to play a monkey game that the play therapist had left him. He also managed to wrestle with his sister, before deciding that he wanted his bed clear of other people!


As his stomach did not seem to be very happy, they switched him over to an intravenous version of panadol, and this managed to keep his temperature down.


Sunday night, he had a bit of a nosebleed around midnight. Thankfully, they had some platelets that matched and were available for Jeremy to use. His nosebleed was not a big one, but he did spew up some blood later. We are also very thankful that despite having high fevers (41 degrees), his blood pressure was stable and he did not require any fluid bolus overnight.

26 September 2009 - evening update

As Jeremy is really suffering from the treatment, he has been having a lot of attention overnight (obs for the last 2 nights have been hourly, sometimes even half-hourly).


Jeremy has been having pretty high fevers >40 degrees more frequently than before - the concern is for the time just after the fever has peaked - there may be dilation of the blood vessels (leading to a drop in blood pressure). When this is combined with sleeping (which naturally drops your bp), Jeremy's bp drops to the level where the nurse is concerned, and calls for a doctor to check on him. For the past 2 nights, they have given him a fluid bolus (basically ~200ml of saline delivered intravenously). This increased the volume of fluid inside the blood stream, and has managed to bring up his blood pressure. Thankfully, Jeremy's body responded appropriately each time, and no escalation was required.

26 September 2009

Friday night was a really tough night for Jeremy.

He had slept most of Friday because he was having high fevers >40 degrees. During the evening and overnight, his blood pressure dropped. He was given 2 fluid boluses (bolii?). A fluid bolus is basically saline given intravenously. They attempted to increase his blood pressure by putting more fluid into his system. The first one worked for about an hour or so, by the time they gave the second one, they were warning me that there was a remote possibility that we could have ended up in ICU (Intensive Care Unit).


The nurses performed observations on Jeremy once an hour throughout the whole night. This was checking things such as temperature, blood pressure, pulse, checking his colour, feeling his feet to see if they were cold and checking the circulation there. As Jeremy had a fever for most of the night, he was also quite cranky, and demanded that I put the thermometer in, or that I put the bp cuff on. There was much prayer and anguish. Thankfully, we were not required to move up to ICU.


Saturday was a better day for Jeremy. Yesterday he had slept through the chance to play with the play therapist. Today, he got a surprise visit from Mummy and Stephanie. He really brightened up with their visit. It was really good timing as they were also able to assist moving rooms. We have made it into one of the specific transplant rooms in Camperdown Ward. This is in a quieter wing, and is closer to the nurses area, so they should be able to keep a better eye on Jeremy overnight (which we earnestly hope and pray is not required!!).


He has had some tummy aches, and his nasogastric feeds have been reduced accordingly. He has started TPN (feeds via IV) tonight to make up for the shortfall. Let's hope we both get a better sleep tonight - he has already got a good headstart on me :)

25 September 2009

Well, the post-transplant honeymoon period is now over! Jeremy has been spiking fevers around 40 degrees every 5-6 hours. Thankfully, his fevers respond to Panadol and when his temperatures come down then he is happy to get up and play! The doctors are not concerned, and say that his fevers are all part of the transplant process - his little body has been hit so very hard with chemo and TBI, and he does not have any white blood cells to fight bacterial/fungal/viral infections. Please pray that these fevers will pass very quickly, and that his new bone marrow will soon engraft and start producing good blood cells.



Today will also be his 18th red blood cell transfusion and his 16th platelet transfusion! For those wishing to help him and other oncology children (and who are able to do so!), please give blood at your local Red Cross!

24 September 2009

T+9

Jeremy had a couple of fevers overnight, around 11am this morning it peaked at 40.1 degrees. This was the first time he has had a fever over 40 degrees during this admission. The nurse said that it wouldn't be a real transplant without having had a few fevers over 40 degrees. In our weekly meeting with the team today, they were pleased with his progress and were quite surprised to hear that Jeremy had attempted to eat some bacon this morning (He did have a big spew session around 10:30am, where he seemed to empty out everything in his stomach).


However, he brightened up a lot this afternoon and happily played with the play therapist, creating new window decorations from litmus paper and paints. These will get laminated and then put on display on his windows. The room is steadily filling up with the results of his artistic activities.

23 September 2009

T+8
During playtime today, he got the play therapist to help him paint a glittery dinosaur, and then had her read a book to him. She brought over a little wheelchair for his Baby and he happily pushed it around the room. Jeremy was quite pleased, as he explained that Baby needs a wheelchair because Baby has no legs! Wanna see what Baby looks like? Well, Jeremy's baby looks like this one, but it has a central line taped to the chest, as well as a nasogastric tube stuck to its nose. Use your imagination and click here.

22 September 2009

Today is one week post transplant!

We are so thankful that Jeremy has been coping well with the treatment so far. Although he has mucositis, he is still managing to keep up with his nasogastric feeding. He has had the occasional stomach pain, but thankfully this has been managed with extra morphine. The doctors are pleased with the progress so far, but have warned us that it is still possible that he will get worse before he gets better. However, they did look in his mouth, and his tongue looks better than it did a few days ago.


The play therapist came by in the morning, but Jeremy was having a nap. Fortunately, he was awake when she dropped by later that morning.

21 September 2009

The play therapist came in the morning, and Jeremy got to play with some new cardboard cutout dinosaurs. He also got to play with water - washing the plastic dinosaurs and splashing in general. He had a bit of a nap for most of the afternoon, and therefore missed out on his weekly visit from the music therapist.

20 September 2009

T+5
Today, they increased the base amount of morphine, and Jeremy was active again. Stephanie was able to visit today, and the 2 children were very happy playing together. Jeremy still has the occasional fever - his temps are fluctuating up and down.

19 September 2009

T+4. Jeremy's temperature fluctuated last night, and hit 38 degrees this morning. This means they took blood cultures to determine if there is any infection. He had platelets today as his platelet count was low.


Last night was a restless night for Eleanor as Jeremy seemed to be in some discomfort. Jeremy complained of pain in his tummy in the morning, so they stopped the feeds and hooked up the morphine. They restarted the feeds later and he did not complain or suffer further discomfort. Jeremy ended up sleeping/resting for most of the day.

18 September 2009

The play therapist came by today, and Jeremy had a good time playing. Towards the end of the session, he started getting a bit grumpy, and this may be due to discomfort, so some oxycodeine was ordered. Jeremy did some more sleeping in the afternoon, and pretty much slept through dinnertime (not that he really eats much now). Thankfully, he has still been tolerating the feeds through his nasogastric tube. His temperature today edged a bit higher 37.5 vs 37 yesterday, however, it dropped back to 37 this evening.


On a side note: This morning, I had a bit of a sore throat, and so was reluctant to swap over with Eleanor. I went to the local GP, who didn't see anything, but I can feel that things aren't quite 100%. Jeremy was quite pleased that mummy was staying another night. The other sibling was ever so slightly upset when daddy was waiting at school. However, she managed to calm down in the end, and we even constructed part of her project. The main structure has been constructed and it just needs the loving decorating influence that only mummy can provide. If it was up to me, I'd probably take it out the back and spraypaint the whole thing black, but that isn't a girly thing to do...

17 September 2009

Jeremy's had a short play in the morning, and then slept for a bit around lunchtime. The doctors came by to examine him, and noticed that the mucositis is starting to appear more obvious. There are times when he shows some discomfort when swallowing. The pain doctor has been around, and they have written up some higher strength pain killers (morphine will be available on IV if required), however, he seems to be coping with the oxycodeine for now. Let's hope he doesn't need the painkillers as this will almost certainly cause blockage and they are loathe to supply laxatives in his current condition.

16 September 2009

The Day After

I had started my pilgrimage to Westmead a little later than planned, and unfortunately, this meant I ended up waiting 10-15mins inside the carpark waiting for a car space. I had missed out on the last available carspace by 1 car length! The white van got it - it was on the rooftop, so I wasn't massively disappointed.


When I arrived in the room, Jeremy was sleeping. The play therapist had come and gone (it was better for him to sleep than play). We were still a bit bewildered with everything, and in the afternoon, we managed to speak to 2 members of the BMT team. This was reassuring, as we managed to ask some questions and get a feeling of what to expect. We were also advised that the whole BMT team has a weekly meeting with the family, and the meeting includes representation from nursing and one of the dieticians.


He didn't eat all that much today, but he did manage to eat some marshmallows and some frozen blueberries. Other than that, we have been told not to worry as the nasogastric feeds are sufficient for his requirements - anything extra is a bonus!


We have been told to expect that the next 2-3 weeks will be the worst. Things are expected to get worse before they get better. In their view, Jeremy is doing well given the circumstances. We are hoping and praying that Jeremy will not have a severe case of mucositis - he is starting to show signs of this happening with very thick stringy saliva, and a bit of a hoarse voice at times. We also pray that he does not have any complications or infections, and that he stays the happy cheeky boy that he is.

15 September 2009

Today was transplant day (T-day). Stephanie and I came out to Westmead so we could all be together, as this is a big milestone day for Jeremy.


There was a nice morning session with the play therapist. Both Stephanie and Jeremy played with some green slime/goop and small plastic toys that drowned in the special slime. After making a bit of a mess, the kids were given a special balloon each, and some play doh to entertain them for the rest of the day. They were given 3 colours - green, purple and lilac. Thus far, they have resisted mixing it into one big brown mess.


The transplant itself did not occur until the afternoon - it was over pretty quickly, and relatively uneventful. There was some extra activity in the time leading up to the transplant - extra fluids and specific medication was administered. At 2.45pm, the small pack of blood (~100mls) started infusing into Jeremy via his central line, and 30 mins or so later, it was completed. Who would've thought that such a tiny amount of special umbilical cord blood could be used to save a life.


The pre-meds made Jeremy a bit irritable and tired - he ended up napping/resting on his bed for most of the afternoon. After the transfusion, he wasn't feeling that crash hot, and coughed/spewed up some blood. Thankfully we had been warned of the potential side effects - of which this was one. The other thing we noticed was a chemical smell, that was similar to creamed corn, but had a slight chemical tinge. This smell will come out of Jeremy for a little while - it is from the preservatives that were used with the cord blood.

14 September 2009

One of the things that we had been expecting (and half dreading), was the move around the corner. Most of the transplant patients are kept in the first 4 rooms, which located in a separate corridor.



Early this morning, the transplant team were still considering what to do/where to move us (I had been asking them the last few days in order to prepare for the move). Later this morning, we finally found out that they decided we were going to stay in the same room! For a number of reasons, they decided against a cascade of moves (the ward was pretty full), and so we had to vacate our room for a bit over an hour whilst the cleaners did a big clean-up. PawPaw even saw the cleaners changing the curtains in the room, and we noticed that some of the ceiling grot that I pointed out to the nurses had been finally cleaned.



Ultimately, we are happy and relieved/thankful to be remaining in Camperdown ward. The room might be slightly noisier than in the other wing, but its not so far a walk to the amenities (parents room and facilities).



The play therapists are going to play a bigger role in his everyday activities. They will create a personalised sign for Jeremy to decorate his door. They will also create a bunch of posters to personalise the room for Jeremy. His current favourite cartoon is The Land Before Time (think of a bunch of young herbivorous dinosaurs running away from carnivores).

13 September 2009

Hooray! Another Gate Pass today!



However, this will really be the last Gate Pass for a long time, as Jeremy will be hooked up to Cyclosporin tonight and tomorrow in readiness for his bone marrow transplant on Tuesday. Cyclosporin is an immunosuppressant or anti-rejection drug which will reduce the activity of Jeremy's immune system so that it will not reject the donor cord blood (the new bone marrow that he will receive on Tuesday).



Cyclosporin will also be used after his bone marrow transplant to help reduce GVHD (Graft Versus Host Disease). GVHD is an immune reaction when cells of the donor's immune system recognise Jeremy's body as foreign and attack it. The skin, gut and liver are common targets of GVHD. Please pray that Jeremy will not experience severe GVHD complications, but that he will have a tiny bit of GVHD (which the doctors refer to as Graft Versus Leukaemia) so that his new immune system will wipe out any remaining leukaemia cells.

12 September 2009

Jeremy was given the chemo Etoposide this morning, then was allowed home on Gate Pass!

11 September 2009

Thanks to all who have been praying for Jeremy's TBI - he has now completed his 6 sessions of TBI without any general anaesthetic! He also scored another Gate Pass home tonight!

10 September 2009

Jeremy didn't need any general anaesthetic for his 2 TBI sessions today! He was also feeling well enough after his TBI to go home on Gate Pass for dinner tonight (and yesterday night too!). We had expected him to stay in hospital once TBI started, but the doctors and nurses are very keen for him to enjoy as much time out of hospital as possible and have been very accommodating!



We are really thankful that he is feeling much better after these radiation sessions. On Wed night, he had spewed in the car on the way home, had watery/glassy eyes, and wasn't quite his usual self. Today (Thu), he had to have some blood products (immunoglobulin), which the nursing staff managed to get done between radiation sessions. But when he is home, Jeremy is so happy and cheerful, he just brightens up and has an amazing amount of energy for play.

9 September 2009

Jeremy was such a good boy and lay so still during his TBI sessions today - he didn't need to have a general anaesthetic, and was just happy to watch The Land Before Time on a portable DVD player! He has two 30 minute sessions each day - at 8.30am and at 3.30pm. For each session, he has to lie in a special perspex bed, while radiation is beamed onto one side of his body for 15 minutes. Then his perspex bed is rotated 180 degrees, and radiation is beamed onto the other side of his body for 15 minutes.