Wednesday, September 30, 2009

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!

Tuesday, September 29, 2009

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 ...

Monday, September 28, 2009

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


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.

Sunday, September 27, 2009

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.

Saturday, September 26, 2009

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 :)

Friday, September 25, 2009

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!

Thursday, September 24, 2009

24 September 2009


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.

Wednesday, September 23, 2009

23 September 2009

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.

Monday, September 21, 2009

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

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.

Saturday, September 19, 2009

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.

Friday, September 18, 2009

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.

Thursday, September 17, 2009

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.

Tuesday, September 15, 2009

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.

Monday, September 14, 2009

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).

Sunday, September 13, 2009

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.

Saturday, September 12, 2009

12 September 2009

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

Friday, September 11, 2009

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!

Thursday, September 10, 2009

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.

Wednesday, September 9, 2009

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.

Tuesday, September 8, 2009

8 September 2009

We are very thankful that Jeremy has been fever-free since last Tuesday and has been able to come home on so many Gate Passes. Today will most probably be his last Gate Pass for a long time, as he starts TBI tomorrow in preparation for his bone marrow transplant next Tuesday. He has quickly adjusted to his nasogastric tube, and wants to help when we attach his tube to the Kangaroo pump for his nasogastric feeds! He is so full of life and energy - watching him play at home, you wouldn't know that he is seriously ill.

Monday, September 7, 2009

7 September 2009

Jeremy came home on a Gate Pass today, and will go back to hospital tonight for a red blood cell transfusion.

The bone marrow transplant doctor has confirmed that TBI (Total Body Irradiation) will be twice a day on Wednesday, Thursday and Friday of this week, followed by the chemo Etoposide on Saturday. Jeremy's bone marrow transplant is now scheduled for Tuesday 15 September.

Sunday, September 6, 2009

6 September 2009

Thank God that we could all spend Father's Day at home!

Saturday, September 5, 2009

5 September 2009

We are thankful for another Gate Pass and another day at home together!

Friday, September 4, 2009

4 September 2009

Jeremy had a platelet transfusion this morning, then came home on a Gate Pass!

Thursday, September 3, 2009

3 September 2009

Thank God for keeping Jeremy fever-free, so that he could have another Gate Pass today!

2 September 2009

Today Jeremy was granted an unexpected Gate Pass! As he has not had a fever since his rigors on Monday, and as he is otherwise active and "well", he was allowed to come home between antibiotics!