Monday, 27 February 2012

FAB news (so far)!!!

Oscar had a GREAT day today, up early for breakfast as he was supposed to fasting for theatre from 8am, however the procedure ended up being postponed as his blood counts weren't quite good enough.  Trying again tomorrow.  He painted a wooden dinosaur for Daddy (who is fast running out of space on his desk in work!), and made a dinosaur themed photoframe for his picture of him with his friend baby Isabella on the ward.  We went for walks around the ward (he was laughing at me calling him jelly legs!), and lay down to watch his favourite programs (Olly the Little White Van, The Cat in the Hat, Horrid Henry) when he got tired.  He showed off his Mobigo games console driving skills to Doctor Conal, and generally had a lot of fun.  A really good day.

However it got much better this evening as his Consultant talked us through the test results from last week, in summary "a significant response to treatment"!!!  The CT and MIBG scans were extremely positive, only major tumor left is the one on his liver, which is greatly reduced.  The doctors are still in discussion over whether or not to attempt removing all or part of it by surgery, as this naturally comes with its risks.  It was confirmed that the bone marrow samples taken were clear of disease.  The only uncertainty was that the bone trephines (small disc of bone removed along with bone marrow sample), which are clear of disease, werent big enough samples so they will take a couple of extra samples when he is in theatre again.  We should find out these results next week.

Overall, it is absolutely brilliant news.  We really couldnt have wished for much better progress at this stage- although there is still a long way to go!  Keep up the fight wee man!!

We also just want to say a big thanks to all the hospital staff who have each played an important role in getting us this far!  Thats everyone from the cleaning staff right up to the senior consultants who all have a special relationship with Oscar.  He really is one of the stand out characters on the ward and has plenty of laughs and banter with everyone.

Go #TeamOscar!

Friday, 24 February 2012

Things continue to improve, but nerve-wracking times...

You all know what an AWFUL weekend Oscar (and us) had last weekend, it's amazing how quickly things can change for oncology patients!  He has continued to improve this week, slowly but surely, and we are hopeful that this will continue.  His temperatures have almost stabilised, his tummy is getting better, and he is asking for food and eating it!  It has been months since Oscar has ate a full plate of food, you cannot imagine the joy we feel to see him doing this now.

Yesterday and this morning he had his MIBG scans - he is injected with a radioactive dye which attaches itself to the neuroblastoma cells, then they are detected by the scanner.  We were watching the image form on the screen as the scanner moved over his body, obviously we cannot interpret these ourselves, but there certainly were large areas showing up around his stomach area.  His legs didn't seem to be showing up, which hopefully means his bones are no longer affected!  Stressful times now, waiting for all the tests from this week to be interpreted, and a plan for Oscar's next stage of care drawn up.  We are keeping ourselves distracted by trying to spend some time away from the hospital environment - Stephen out with his friends from QUB tonight, I'm hitting the town with my sisters tomorrow night!  Anything to make these days pass a bit quicker so we know where we stand.

On Monday/Tuesday, we hope that Oscar will have his stem cells harvested.  This is another invasive procedure for the poor little man, a large tube will be inserted in a vein in his groin (under anaesthetic in theatre), his blood taken out and the stem cells removed, and the blood pumped back into him again.  These stem cells are bone marrow cells (which should now be cancer free) and will be used to populate his own bone marrow after he receives his high dose chemo further down the line.  I suppose it is an alternative to a bone marrow transplant as we know it, the aim of this being to transplant his own marrow back to him once he needs it.

Oscar's hair has also started to grow again, cannot believe how quickly this happens!  Just fine little blonde hairs appearing all over.  You can see the shadow in this photo...!
Yesterday Oscar attempted to walk - he hasn't stood up for weeks now, so he found it really difficult, his legs kept buckling beneath him.  We were trying to help him by supporting his weight, but he got really angry and insisted he wanted to do it himself!  This stubborness and sheer determination is what we are hoping will carry him through this challenging treatment, and happily out the other side.  He really is a little fighter.  As we start to see signs of getting our little boy back (see pic below), it is difficult to imagine starting him on more chemotherapy - everyone keep everything crossed that this won't be necessary, and we can move straight to surgery!
Keep it up Oscar, you are doing GREAT!! xxx

Tuesday, 21 February 2012

Great end to a bad week!

It has been a very difficult and sleep deprived week since Oscar was admitted last Tuesday, but today (Monday) he had a crucial CT scan to see how the tumours have responded to the first stage of treatment- Induction Chemotherapy.  Oscar did have an ultrasound mid way through this phase which indicated good progress, but the CT scan at the end is the big one! It was a nervous wait for the 'provisional' results (official radiographers report due tomorrow) but when they came it was a great relief.  Oscars Consultant reviewed the images with the radiographer and reported that all of his lymph nodes look clear, and the large tumour in his liver (previously the size of an apple) is now very small!!!! This is obviously brilliant news, but it is difficult to get over excited as there is still a long way to go.

Oscar is still having high temperatures tonight, but they are less frequent and he seemed a bit brighter today, plus his white cell count is up a little, so we are hopeful the antibiotics are finally having some effect.  We'll have a better idea tomorrow.  If there is no improvement they will probably have to surgically remove his central line (used to administer drugs and fluids) as they suspect the infection could be in the line itself.  He is fasting from midnight incase he needs to go to theatre tomorrow.  Fingers crossed.  Again!

Sunday, 19 February 2012

Things getting worse instead of better!

Poor Oscar has had a terrible few days, his temperatures are getting progressively worse, hitting 39.7 degrees last night!  This is despite the fact he is now on strong antibiotic number 7 (or perhaps 8 - we have lost count!)  He is thoroughly miserable, crying and whimpering even while he is sleeping.  It is absolutely heartbreaking to watch.
You can see the old scar from Oscar's bone biopsy which finally led to his diagnosis in November
He is hooked up to so many machines, with alarms going off continuously due to his high heart rate.  He is getting pumped full of magnesium, potassium, sodium, and all those antibiotics.  Very frightening to think that so many things are being thrown at this infection, but it still has a huge hold over Oscar, and is in control at the moment.  We are wishing with all our hearts that each day he turns the corner and starts winning this battle, perhaps tomorrow is that day!
Oscar is currently connected to 5 different machines to monitor his condition or administer medication
Yesterday Oscar had a heart scan, to see if this infection has taken hold in his heart or one of the valves, but nothing could be identified.  This morning, the doctor suggested doing a CT scan of his abdomen to look for areas of infection, but we aren't keen for him to have too many CT scans - he is due to have his full body assessment CT scan tomorrow, and we want it all to be done at once rather than put him through 2 (due to the risks involved).  He is too unwell to have anaesthetic for this as planned, so it has been suggested he might lie still without anything...?  We really can't wait for Oscar's own consultant to return from holidays tomorrow, so that he can take ownership of this whole situation and devise a plan.

Off to bed now, it will be another very long week, and neither of us are getting much sleep!  Thanks again for all the support and well-wishes we are receiving, we really appreciate it all.  We will let you all know of any major developments over the next few days on Twitter @Wee_Oscar.

Thursday, 16 February 2012

Poor Oscar is having a really tough time...

Hi everyone, you know when the blog is quiet things are happening!  Unfortunately Oscar was admitted to hospital unexpectedly once again on Tuesday, he was just so poorly but no one could put a finger on what was wrong.  We thought that it was a combination of the effects of chemo (he never really recovered from session 7, then session 8 just hit him so hard), and the fact he hasn't been eating or drinking properly for quite a few weeks now. 

However it was confirmed last night that he has a blood infection, on top of the fact his salts (potassium, magnesium and sodium) in his blood are very messed up.  So 3 very strong IV antibiotics now running, several bags of fluid with added salts, TPN feed (nutrition straight into his veins), and a blood and 2 platelet transfusions.  Poor little man hasn't sat up unaided in about a week, but even if he wanted to he couldn't, being hooked up to all those drips!  Since this evening, he is now hooked up to a heart (ECG) monitor as well, to make sure the very low potassium level in his blood isn't causing his heart any harm.  It was mentioned that he may need to be moved to intensive care if he needs any further monitoring, but for now we are being well looked after by Oscar's amazing care team in the haematology ward.

Oscar is spending his days lying down watching tv and DVDs, or else just staring into space.  We just CAN'T WAIT to see him up and about getting up to mischief again!  Thanks for all your support on Twitter @Wee_Oscar.  Please keep everything crossed that Oscar will be well enough to go through all his tests next week (bone marrow, full body CT scan, MIBG scans, audiology, GFR kidney function test), after which we hope to get the good news that he is ready to move to our next phase which is stem cell harvest and surgery.  C'mon Oscar, you can do it!!!  We love you and are SOO proud of you!  XXX

Friday, 10 February 2012

HUGE thanks to our friends at Fujitsu!

Stephen and I have been overwhelmed by the support we have been receiving, from family and friends of course, but also from our workplaces!  My friends and colleagues at Fujitsu had a cake sale in order to raise funds for the MRI scanner - I know the cakes will have been amazing, but the generosity of everyone there has exceeded our wildest expectations...£1000 has been raised by staff, with a further £500 pledged by Fujitsu!  Thanks so much!

The MRI scanner appeal is so close to our hearts, it causes us distress to know that each time Oscar is assessed via CT scan, he could be having the much safer option of an MRI scan, if only one was in place at the Children's hospital.  So if anyone has any contacts in Stormont to raise this issue, or any other means of publicising the fact that the Royal Belfast Hospital for Sick Children is the only childrens hospital in the UK without its own MRI scanner, please please do so.

So many of our friends have also been answering our calls for everyone who can donate blood to do so.  We see recipients of this vital service on a daily basis, young kids who are facing the fight of their lives, and each time you donate you are helping someone who is in such a vulnerable position like Oscar.  My manager Angela at Fujitsu is working hard to organise a mobile blood transfusion unit to come to Holywood Road - this is an amazing gesture by everyone there who has signed up to donate, you honestly have no idea what this means to us and every single family on the receiving end.  A huge thanks to Stephens old friends and colleagues at Queen's University Belfast too - Gary and Peter who have been actively encouraging everyone to donate blood, and all those who have taken time to do so.  Thank you.

Since we have started this blog, and went on Twitter @Wee_Oscar, the messages of support have also been flooding in from around the world.  Thanks to each and every one of you who have taken time to read about Oscar and our plight, and responded so kindly and sincerely.  Those messages have definitely helped us keep our chins up when times get tough.

Oscar is not feeling so good today, and had to have a feeding tube passed through his nose, but Chemo 8 commenced last night and the effects are just hitting him so hard now.  I'll post a further update on his progress when this finishes over the next day or so.

Tuesday, 7 February 2012

Chemo 7 takes its toll...

I know there has been a gap in the blog updates, but we are trying to keep a lot of plates spinning right now, and most importantly Oscar really needs us!  He got through chemo session 7 with no fuss as usual, but he has really been feeling the cumulative effect of all these sessions over this past few days. 
Oscar & Isobella after Chemo 7
Poor little Oscar, he was up and down over the weekend when we had his auntie Martina visiting from Manchester, but when we went to the clinic on Monday for routine blood checks we ended up getting admitted to hospital.  He is very run down, and has a very sore mouth which is a common side effect from chemo.  It looks extremely painful, and he can barely eat or drink anything, but he still hasn't complained once.  I am honestly in awe of my 3 year old son and his strength and bravery, a very humbling experience for any parent.  He also had a temperature, which always means hospital admission and IV antibiotics when a child is on chemotherapy.

As well as IV antibiotics Oscar is on powerful anti fungal medicines for his sore mouth, and is now receiving TPN (nutritional support administered directly into his veins rather than through a feeding tube into his stomach).  He had the NG feeding tube through his nose to his stomach for a few days at Christmas, and although this got him back on his feet he hated it so much we really want it to be a last resort again.  He didn't eat anything while this was in place, refused to talk, and held his hand over his mouth most of the time.  It definitely seemed to affect him quite badly, he became such a nervous and introverted little boy, and we would hate to see that happen again!
27th December 2011
Today was a reasonably good day, Oscar managed to sit up to make a robot with Sophie (the amazing play specialist) and ate 2 fish fingers for lunch!  Hopefully we will begin to see an improvement in his overall well being once all these new treatments take effect.  He is having a boys night tonight in hospital with his Daddy, while I am at home trying to spend some time with Izzie, clean the house, wash and iron clothes, do some food shopping, and get some sleep before heading back into hospital for 8am tomorrow...  Special *thanks a million* to the grannies, grandas, aunties and uncles helping us to spin those plates...