Monday, August 31, 2009

31 August 2009

Jeremy was most upset this morning when he woke from his "special medical sleep" with a nasogastric tube up his nose and down his throat! But by the afternoon, he seemed to be getting used to it and is tolerating his new nasogastric feeds. At the moment, the nasogastric feeds are just a supplement, and he is also eating using his mouth.

The doctors have found that Jeremy's fevers are caused by an ESBL bug (a bug in his gut), and have changed his antibiotics accordingly. After his antibiotics were changed, he experienced higher fevers and about 15-20 minutes of rigors - apparently this meant that the bug was reacting to the new antibiotics and that the new antibiotics are working! He has also been moved from a shared room to a single room because of the bug, but is still in Camperdown Ward.

The bone marrow transplant doctor decided today to postpone Jeremy's bone marrow transplant from 7 September to 14 September, to allow him a week to recover from his fevers. So instead of TBI and the chemo Etoposide this week, Jeremy will have TBI and Etoposide next week - for the rest of this week, he will be continue his course of antibiotics to fight the bug.

Sunday, August 30, 2009

30 August 2009

Today was a bit of a strange day. Jeremy was agitated and upset, often screaming, being grumpy and quite out of character.

Overnight, Jeremy did have a fever, but his body responded to the panadol, so by the time we arrived, he had reasonably normal temperatures. However, this morning's blood count results were low, and he was given a transfusion of platelets and red blood cells. I think his mood wasn't helped by an interrupted sleep last night, in conjunction with the pre-meds given before the transfusion (to reduce allergic reactions). He was also woken a few times today to have his obs done.

Later, one of the nurses suggested giving panadol despite him not having a fever. This seemed to calm him down, and we hope he manages to get a decent rest tonight, for tomorrow is another bone marrow aspirate and he will wake up with a nasogastric tube.

Please pray that he doesn't get distressed with the tube, and that his body copes well with this tube feeding. He will be required to fast for ~13hrs a day on Tue/Wed/Thu as he undergoes his radiation treatment, so the ability to feed him whilst he is asleep will be important.

Saturday, August 29, 2009

29 August 2009

The fever is here.

Jeremy's temperature was up over 39 degrees today (update: 39.9 this evening), so he has been hooked up to antibiotics and is stuck in hospital. No gate pass today!!

He did feel a bit warmer than usual last night, but he was around 37 degrees, and even this morning at 8am, he was under 38. However, when it was time to go, the last check found he had breached the 38 mark.

As you'd expect, Jeremy was massively disappointed (as you would). However, it's funny how things work out in the end. This morning, we were a little bit stressed when the overnight nurse forgot(?) to take Jeremy's blood at 6am, and it was not done until after 9am. However, that delay meant that they had to wait until after 9.30am to get the results. The obligatory last obs/checks (to get out) found that his temp just broke 38 degrees. That meant he had to be hooked up to antibiotics and encouraged to enjoy his immediate hospital surroundings. If there was no delay in the morning, we probably would have arrived home just in time to figure out we needed to bring him straight back to hospital. So from one perspective, that was one round trip saved.

Other news (1)

New single seat fold-out sofa beds have arrived! I'm pretty sure it was an upgrade provided through the Cure Our kids charity - linky here. As there is no longer a representative of the charity on the ward, we haven't seen or heard anything for quite some time. Eg. They used to have food in the pantry, but for the past few months whilst we have been there, it's been a bit like Old Mother Hubbards...

Anyway, so I got this brand new sofa bed to break in on Thursday night - it was much more comfortable than the old ones (estimated to be 13 years old). Entry/Egress is more challenging due to high and wide armrests, but the main distraction is the new car smell!

Other news (2)

There has been an outbreak of gastro in the ward and all the common areas have been closed off. In the past, we have known that some patients were kept in isolation due to having gastro, but now it seems that these carers were not careful with hygene, and it has spread to other patients. So for now, all the common areas are off limits until further notice. This means that the ward is definitely less "convenient" and less "friendly" for all residents.

Public service announcement: Most of you should be familiar with this concept, but yet for some of the population it must be foreign. If (!) you wash your hands, there is some benefit to use a substance called Soap! (Not to be confused with SOAP). Apparently, using soap is part of good hygiene.
A special thanks goes out to those who have failed to wash their hands properly. Without you, this outbreak/clampdown would not be possible./End

Friday, August 28, 2009

28 August 2009

Thank God for yet another day home on Gate Pass!

Thursday, August 27, 2009

27 August 2009

Praise God that Jeremy is still full of beans and can come home on a Gate Pass today!

Wednesday, August 26, 2009

26 August 2009

This morning Jeremy had a GFR scan (Glomerular Filtration Rate scan) to check his kidney function, and then came home on another Gate Pass!

Tuesday, August 25, 2009

25 August 2009

Jeremy had a platelet transfusion and a red blood cell transfusion this morning, then left hospital on another Gate Pass this afternoon! We are thankful for this precious time that we can spend together at home!

Monday, August 24, 2009

24 August 2009

Jeremy had a "jelly test" (echocardiogram or ultrasound of the heart) this morning, then came home on another Gate Pass!

Sunday, August 23, 2009

23 August 2009

Hooray! Jeremy came home on another Gate Pass today!

Saturday, August 22, 2009

22 August 2009

Jeremy finished his 5-day course of chemo yesterday, and was granted a Gate Pass this morning. This means that because he didn't have a fever and was otherwise "well", he was allowed out of hospital for the day, but had to go back to hospital at nighttime to sleep. The bone marrow transplant doctor is happy for Jeremy to go out on Gate Passes from now on unless he develops a fever. Jeremy had lots of fun playing with Stephanie at home and at the sandpit park, and we are thankful for every day that we can be together as a family out of hospital!

Wednesday, August 19, 2009

18 August 2009

Jeremy went back to hospital yesterday - he had to go early as he had a diagnostic lumbar puncture under general anaesthetic. He was such a good boy in the morning - he already knew he was not allowed to eat, and did not make any fuss.

He recovered well from his lumbar puncture, and did not appear to be cranky, but happily ate some food. He also started on a new combination of chemo drugs which took about 10 hours to administer. Thankfully, they were allocated a room in Camperdown Ward.

At the moment he is still very active and cheeky, and he tries to go to the playground outside as much as possible when he is not hooked up to his chemo.

We met with the bone marrow transplant doctor this afternoon, who confirmed that Jeremy is still on track for his bone marrow transplant on 7 September 2009. However, he has decided that instead of 4 days of TBI, Jeremy will now have 3 days of TBI followed by a day of chemo Etoposide which will further clean out his bone marrow. Although his MRD is still "high" at 1%, the doctor expected this and hopes that his current course of chemo will lower this further.

Friday, August 14, 2009

14 August 2009

This afternoon we came back from a wonderful holiday at Ulladulla, thanks to Yurana Cancer Kids Holiday Homes! We drove down the coast on Tuesday, and Stephanie and Jeremy enjoyed watching the blowhole at Kiama. They were so excited when we took them to Mollymook Beach - they loved to dance along the seashore, laughing as the waves tried to catch them! They were fascinated by the otters and meerkats at Mogo Zoo, and Jeremy liked to roar at the lions and tigers! We are very thankful that we could have a break together as a family, and make happy memories for the children, before Jeremy has to go back into hospital next Monday.

Although the plan is that Jeremy will have one week's chemo, then one week's break, then 4 days of TBI followed by his bone marrow transplant, the doctors expect that he will be in hospital from next Monday until after he recovers from his bone marrow transplant - ie. he will be stuck in hospital for a few months! We are hoping that he will be well enough to come home between chemo and TBI, but the doctors anticipate that he will be quite sick after his chemo and will need to stay in hospital.

We are thankful that there is suitable cord blood that will be used for Jeremy's bone marrow transplant. Basically, the aim of the chemo and TBI is to destroy any remaining blast cells and clear out his existing bone marrow, so that there is space for the cord blood to go into his bone marrow and start producing healthy blood cells. The cord blood will be given via a drip through his central line, and it will take several weeks for the cord blood cells to grow and start producing. Until such time, Jeremy will be very susceptible to infection and bleeding because he will have no immune system and no ability to create his own blood cells. He will require numerous red blood cell and platelet transfusions. He will be in a special isolation room in Camperdown Ward, which has its own air-conditioning. Even after he is eventually discharged from hospital, he will need to be isolated at home for a few months to allow his new immune system to mature - he will also need to have all his childhood immunisations redone!

We are also thankful that Ken's work has been so understanding and compassionate, and has allowed Ken to take leave so that he can spend lots of time with Jeremy and concentrate on helping our family through this difficult time.

Wednesday, August 12, 2009

12 August 2009

The bone marrow transplant doctor rang this morning with good news. Although he does not have the MRD from Monday's bone marrow aspirate, he is happy with the initial results and told us that Jeremy can go ahead with his bone marrow transplant! Praise God! Jeremy will be admitted on 17 August for a week of chemo followed by a week's break, then 4 days of TBI on 1 September and the bone marrow transplant on 7 September. Thanks to all who have been praying about this for Jeremy!

Monday, August 10, 2009

10 August 2009

Although Jeremy's neutrophil count was 0.5 this morning, the doctors were happy with his overall blood counts and decided to go ahead with his bone marrow aspirate and lumbar puncture today. It will take about a week to obtain the proper results of the bone marrow aspirate (the MRD - Minimal Residual Disease), but at the moment the plan is that he will be admitted to hospital next Monday for a week of pre-bone marrow transplant chemo.

Friday, August 7, 2009

7 August 2009

We had a tiring afternoon at hospital today, waiting around at the eye clinic. Jeremy's appointment was supposed to be at 2pm, but we only saw the eye doctor at 4.20pm. However, Jeremy was a compliant patient and we are pleased to report that he has perfect vision!

Jeremy has been so happy and cheeky since he has been back home, and seems to be eating non-stop throughout the day! At the moment, he is addicted to pappadums! At least he is getting lots of protein, because pappadums are made from lentils!

Wednesday, August 5, 2009

5 August 2009

Jeremy had some more pre-bone marrow transplant reviews today. He lay still and watched The Wiggles on video while he had an echocardiogram (like an ultrasound of his heart) - Jeremy calls it the jelly test, because they put gel onto his chest! He also blew hard for his respiratory function test, which measures his lung capacity.

The bone marrow transplant doctor told us that Jeremy's neutrophils (white blood cells which fight infection) need to be at least 1.0 by next Monday (10 August 2009) or his bone marrow aspirate will be postponed until the following week. His neutrophil count today was zero. Hopefully, his neutrophil count will recover quickly and be much more than 1.0 by Monday, so that they can get some proper results from his bone marrow aspirate and then we can proceed to transplant. And hopefully, there will be no blast cells left in his bone marrow!

Monday, August 3, 2009

3 August 2009

Today was a very busy day at hospital. Jeremy had 5 appointments - a checkup at hospital clinic, and 4 pre-bone marrow transplant reviews. Jeremy was such a good patient and obligingly opened his mouth for the dentist, lay still for a bone mineral density scan at nuclear medicine (where the machine took a picture of his whole skeleton), continued to lie still for a CT scan (fungogram), and listened carefully at his audiology review. The doctor is pleased with Jeremy's recovery from his fever and hopefully Jeremy's blood counts will be OK so that can have his next bone marrow aspirate next Monday.