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!


  1. Oh Leona, I just simply cannot imagine how difficult a time you & Stephen must be going through watching your little boy feel soo sore and ill. I know I say it everytime I leave a post but I dont know what else to say to be honest other than that Im thinking of you all and praying soo hard everynight. Stay strong Mrs and keep giving Oscar your biggest smile, seeing your strength will keep him strong. love Kiera x if you ever need anything plz... 07810388620

  2. Leona, heartbreaking to read, I can't imagine what it would be like to go through it. As always, you are all an inspiration. Hope you are feeling better after your bug last week. In our thoughts & prayers
    L x

  3. maggie.danhakl@healthline.com27 September 2014 at 20:28

    Hi Leona,

    Healthline just designed a virtual guide of the effects of chemotherapy on the body. You can see the infographic here:

    This is valuable med-reviewed information that can help a person understand the side effects they are experiencing from their chemo treatment. I thought this would be of interest to your audience, and I’m writing to see if you would include this as a resource on your page:

    If you do not believe this would be a good fit for a resource on your site, even sharing this on your social communities would be a great alternative to help get the word out.

    Thanks so much for taking the time to review. Please let me know your thoughts and if I can answer any questions for you.

    All the best,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107 | @Healthline | @HealthlineCorp

    About Us: