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!