Thursday, December 31, 2009

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.

Wednesday, December 30, 2009

30 December 2009


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.

Tuesday, December 29, 2009

28 December 2009


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!

Monday, December 28, 2009

27 December 2009


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!

Sunday, December 27, 2009

26 December 2009


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.

Saturday, December 26, 2009

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.

Thursday, December 24, 2009

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


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!

Wednesday, December 23, 2009

23 December 2009


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!

Tuesday, December 22, 2009

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!

Monday, December 21, 2009

21 December 2009


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


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!

Saturday, December 19, 2009

19 December 2009


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.

Friday, December 18, 2009

18 December 2009


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


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.

Thursday, December 17, 2009

16 December 2009


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.

Tuesday, December 15, 2009

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!

Monday, December 14, 2009

14 December 2009


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

Sunday, December 13, 2009

13 December 2009


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


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.

Saturday, December 12, 2009

11 December 2009


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.

Thursday, December 10, 2009

10 December 2009


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!

Wednesday, December 9, 2009

9 December 2009


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 ...

Tuesday, December 8, 2009

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?

Monday, December 7, 2009

7 December 2009


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!

Sunday, December 6, 2009

6 December 2009


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

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.

Saturday, December 5, 2009

4 December 2009


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...

Friday, December 4, 2009

3 December 2009


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.

Wednesday, December 2, 2009

2 December 2009


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.

Tuesday, December 1, 2009

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!