Tuesday, 24 April 2012

Oscar is a little superstar!

Oscar was quite poorly when I wrote the last post, and things continued to be very tough for him on Saturday.  He couldn't really tolerate the oral morphine on his little stomach, and so he moved to IV paracetamol.  This worked really well for him, along with several other medications, and on Sunday he turned the corner!  Granny Susie stayed with him for a few hours to let his Daddy home for us to spend some time with Izzie, she gets so neglected when Oscar isn't well!  This is the moment, on Sunday morning, when it was obvious things had massively improved and fun little Oscar was back again...

What a HUGE relief this is, both to see him in much better spirits, but also to see him beat this infection.  Infections pose the biggest risk to kids on chemo, sometimes they just can't overcome them, so we breathe a huge sigh of relief to see Oscar battle his way through another one.  Such a tired old cliche, but he is a such a strong little boy, such a fighter, the harder he fights his way through each step the more hope we have for a positive outcome to all this treatment.

He is still receiving TPN nutrition (straight into his bloodstream), so the big aim now is to get his stomach working properly again, and Oscar tolerating food.  As we increase the volume of his tube feed we can reduce the TPN volume he is receiving.  He can't go home on TPN, so we must get this to zero and tube feed to 50mls/hr for us to get discharged.  C'mon Oscar, lets do it in time for the weekend, you little superstar! xxx

Friday, 20 April 2012

TVD chemo

Oscar started his TVD chemotherapy on Easter Sunday, and this continued for 6 days.  With all the side effects we were warned about, the toxicity, the risks to Oscar that we had to sign off on the consent form, we were a bit anxious about this cycle of treatment.  However, being the little superstar that he is, Oscar completed the 6 days with seemingly little or no effect!  He maintained his fun nature and high spirits throughout, and was full of mischief.  He has located the on/off button on the chemo pumps, which meant he had to be even more closely monitored!  Here he is trying to run away with his drip stand, looking for a chase...

Oscar was discharged on Saturday, and came home still full of fun, eager to play with his little sister Izzie.  However on Sunday, it hit him, he was a different boy.  We were sure he was getting the dreaded temperature (once it hits 38 degrees we have to take him straight to hospital for admission), but he managed to avoid it.  Monday and Tuesday were more of the same, quiet and tired, but we were in hospital on Tuesday for blood checks and he was doing his usual running around with hugs for all his favourite people, and keeping everyone laughing with his little phrases and personality traits. 

On Wednesday he spent a lot of the day sleeping, and no eating, with an upset tummy.  Still no temperature.  Then on Thursday he seemed to be even worse, and in a lot of discomfort.  He wasn't eating, but also not tolerating his tube feeds, so getting no calories. His mouth had broken out in painful blisters.  I phoned the ward for advice, and was told to bring him in, with a bag...

Oscar was pretty lifeless by the time we got to hospital, and we ended up getting admitted, with the plan being to give him TPN nutrition (which is a liquid nutritional replacement, straight into veins), treatment for his sore mouth, and a lot of pain relief.  However shortly after we got settled in our room he had a temperature of 38.7 degrees.  It was almost a relief for this to finally happen, after anticipating it for so long, and so he started on IV antibiotics.  It was a long night, with temperatures and fluids and medication running, and today things continued to go downhill.  It turns out that he is also suffering from low potassium and magnesium, and it is important to get these stabilised to avoid causing heart problems.

Poor Oscar is getting very distressed with the pain that he is in, so much so that he is now getting oral morphine.  This is all a "normal" reaction to intense chemo, but these side effects are horrendous.  Chemo kills all "rapidly dividing"cells, which targets the cancer cells, but also kills your hair follicles and affects your nails, inside of your mouth, and the lining of your stomach.  These are the main areas affected.  So Oscar is suffering from a very painful mouth, which extends right down through his stomach, gut, and to his bottom.  His insides are all completely raw and blistered.  You wouldn't even wish that on your worst enemy, so it is agony watching your precious baby go through it, while you watch, helpless.  He is crying and reaching out to us for help, but there is absolutely nothing we can do, apart from ask continuously for pain relief to help him.  Brave, brave Oscar, I have never witnessed anything like this childs tolerance for pain and sickness, heartbreaking.  Even the medical professionals have commented on it, regularly.  We were due to fly to London on Monday for Oscar to start the next phase of treatment, MIBG therapy, but this has now been delayed for a few weeks in order to get Oscar back on his feet and out of danger. Of course any delay in treatment isn't good, but sometimes there is just no other option than to wait for him to recover from what his little body has been put through. 

We also got a timely reminder of what we are up against, with news of the death of another little boy in England who was battling neuroblastoma.  He was only 4, but had relapsed in January after completing his treatment, and his parents were working hard to raise £500,000 for treatment in USA.  Little Thomas Cammack, another brave little warrior cruelly stolen from his family, RIP xxx.

To end this very dismal post on a more positive note, little Izzie is being her usual self, a crazy little bundle of fun and energy, and her big achievement this week was learning to climb on and off our kitchen chairs. Look how proud she is of herself!

So once again, playing the waiting game, hoping for a speedy recovery for Oscar and a quick onward march through the next stage of this crazy journey!  Keep sending us all your positive vibes, we need plenty of positive energy to enable us to pass lots on to Oscar!

Wednesday, 11 April 2012

Oscar and "The Big Daddy Machine" (stem cell harvest number 3!)

Back from theatre, Easter Egg from nurses!
So we started on that treatment plan I outlined in last post, and had our stem cell harvest on Thursday.  Oscar had the horrible tube inserted in the femural vein in his groin once again, which is definitely the worst part and extremely uncomfortable for him during the 36 hours it was in.  This happened on Wednesday, and the anaesthetist responsible for the procedure was a lovely guy.  He said to me several times before I took Oscar into theatre - "don't worry, we'll take good care of him", and it suddenly dawned on me that although I am still always anxious to see Oscar after these procedures in theatre, I have become so accustomed to handing him over that I just do it now.  No big list of questions, no looking for reassurance, and normally no tears.  The bit I hate the most (and his daddy too), is handing over his floppy little body after the anaesthetic kicks in on our knee, and it is a lonely walk going back to the ward without him to wait for the phonecall from recovery. 

Big Daddy Machine (with eyes on front)
Anyway, the harvest on Thursday was another huge success!  Our aim this time was 1.8m (cells?) to bring us to a total of 6m which will be given back to Oscar in 2 stages.  However Oscar yielded 3.07m!  I am running out of creative ways to say what a star he is, and how proud we are, but you all know.  We had the "Big Daddy Machine", the predecessor of "The Big Machine".  Oscar gave it eyes also.  And once again thanks to the lovely ladies who accompany the machine, and help make the collection procedure such a success.  Oscar has promised to pay them a visit at the home of the Big Machine (City Hospital) once we get through all this! 

We had a lovely quiet Easter weekend, we kept forgetting that it was Easter as we had our celebrations 2 weeks ago!  The kids had even more Easter eggs to open and enjoy - Granny Susie had won a huge egg in a competition, and boy did they enjoy getting stuck into it together!  So sweet to see them help each other undo the wrapper and take turns at having a bite.  They are so close, and even though they disagree sometimes they really look out for each other.  I treasure every moment I see them together like this, but can't help feeling sad and worried about what lies ahead, when Oscar won't be allowed to see Izzie for weeks (perhaps months) due to the intensity of this treatment.  Kids harbour bugs, so Izzie is just too much of a threat to him because his immune system will be non-existent.  And Oscar will be a threat to Izzie once his nuclear radiotherapy (MIBG) starts in London due to his high radiation levels.  My biggest wish in the world is to see the day when they can play happily together, and at bathtime, without Oscar feeling unwell, without worrying about Izzie pulling his tubes, and with Oscar being able to run around and be a carefree child once again.  I want to see him be able to be her big brother, at the moment he is vulnerable and weak and it's just not how things should be.

Oscar was in hospital on Sunday and Monday for 30 minutes of chemotherapy, and we were admitted on Tuesday for more of the same.  I am writing this at home, as we unexpectedly got "released" from hospital for the evening, to go back in tomorrow (Thursday) morning for more intense chemo to continue.  Not sure how long this stay will be, would be great to be home at the weekend once again! 

The countdown is on for London, and that's when this treatment really moves up a gear.  Although, when I said in hospital about having a few tough months ahead, the nurses agreed but reminded me about how far we have come already!  It is 6 months (yesterday), since our whole world turned upside down, and we were told in A&E that they suspected Oscar had leukemia.  Incredible, and frightening, to think we are almost half way through the treatment plan for the diagnosis we received which turned out to be much worse than our initial shock at the thought of leukemia.  When we looked at the pages and pages of treatment information which was outlined for Oscar it just seemed impossible to get through it.  Loads of people say lots of lovely things about how we are coping, but it's all down to Oscar.  Thanks to him, and his strength and courage, we are getting there one day at a time!