Day 1

Today began the second week of the fourth course of antibodies. Last week Robyn had 4 infusions of Interlukin2 (IL2) lasting 24 hours each – back to back. This week is a good week for Robyn as she, like many children, have no real issues with this drug. It is when it is combined with the ch14:18 antibody that the problems start. This is what we commenced today and it’s been a bit of a nightmare but once again, not so much with the antibodies and the IL2 but with the morphine given to alleviate any pain caused by the treatment.

It was decided when she had her last round of therapy (which was the antibody alone – no IL2) that Robyn would receive Fentanyl as opposed to Morphine for pain because the nightmares and hallucinations she was experiencing were so distressing and frightening for her. Robyn reacted very well to the Fentanyl and apart from telling the nurses she loved them and roaring at me every half an hour things went fairly smoothly. This time round however, there are the 2 drugs to be administered – the antibody and the IL2. Robyn has two ports now so the idea being – a port for each of the two drugs and then the Fentanyl can go in one of the lines as well. All was good until Robyn’s nurse queried whether the Fentanyl was compatible with the antibody or the IL2. Nobody knew, so I was given 3 options. Morphine and cope with the hallucinations, an extra cannula put in so the Fentanyl had it’s own access into her body or Fentanyl patches applied to the skin. Now, the thought of putting her through all that IV nonsense again was just too much for me! And what about if the Fentanyl patches didn’t adequately cover the pain? To administer a quick bonus of Fentanyl would require an IV anyway…. So I made the decision that we would take the Morphine and cope with the hallucinations. Bloody horrible choices I have to make sometimes.

I sent Greg home with Tommy as she was picking at him. It’s not fair on Tommy who knows how poorly she is but her nagging at him is relentless.

So today she had fevers, hives, itching, hallucinations, pain in her tummy and neck and every time the poor, exhausted child tried to sleep – nightmares would wake her. She was so restless in the night, I cannot remember how many times she woke crying. It was a rubbish day.

Day 2

Another rubbish day. Robyn woke up feeling pretty bad probably through lack of sleep – I know I did! At about 2pm beame  febrile, shaking, hives, itchy ears and throat, sick, blue lips, mottled skin, feeling awful, trying to sleep but bad dreams again.

Day 3

Again- really dreadful day today. I can’t type that much as I’m really tired. Robyn has been up and down all night. Still having very high temperatures, vomiting, Hives, itching all over, blue lips, fast poo, weight gain because of the fluid retention – although that is much improved this time. Robyn is very upset today as I had to tell her that she wouldn’t be going home in a few days as there was no chance of getting a flight. And then if we did go home, what would happen if, God forbid we couldn’t get back for the final treatment?

Well, it was about 10pm and all wasn’t going well at all. Then, to make matters worse, Robyn shows me a tiny rash at the top, back of her right arm. It was tiny little blisters. This wasn’t Hives. Even I realised that this looked like Shingles. Oh my gosh, I was beside myself! I thought that they would stop the antibodies due tomorrow to treat the Shingles making the last four months of immunotherapy futile! A doctor took a sharp implement to one of the minute blisters and popped it so he could take a swab to ascertain that it was in fact Shingles. Again, this also goes down as one of the many distressing situations I have witnessed Robyn dealing with. We then had to move to a room with ‘Negative pressure’ as she was and still is extremely contagious. All staff wear gowns ,masks and gloves when they enter the room and Robyn is in isolation until the scabs have crusted over. Robyn didn’t get to bed until 3am and I was a while after – laying there petrified that this rash was going to jeopardise her treatment. Treatment that ups her chances of survival.

Day 4

This morning a decision was taken to continue with the ch14:18 andIL2 infusion – thank goodness!!

Straight away a dose of anti viral was given through her line. Robyn then took a dose of Acyclovir orally so the infusion didn’t have to stop. Shingles is caused by the Varicella-zoster virus, the same virus that causes Chickenpox. After an attack of Chickenpox the virus lays dormant in the nerve tissue. Shingles appears more common in people with weak immune systems and Robyn’s immune system must be quite weak at the moment. It’s not been a nice day but it has actually been the best day of this round so far. The difficulty Robyn had been experiencing with this round of antibody, I feel, was because she was brewing for this case of Shingles. L It is now 12.40 am and she has just had the 3rd dose of anti viral given intravenously through her port. She has a very upset stomach and is covered in Shingles rash and Hives. Her little body looks very battered and I feel devastated. Again I ask myself, “Why?”   We have lived for a year in the ‘My child’s got cancer ‘ world and I still ask my self “why?”.

So, the number of children who have succumbed this month to Neuroblastoma continues, our family also suffered it’s own loss.  Greg’s dad passed away aged 69yrs. He had battled with cancer of the liver and oesophagus for the past three years. Whilst we have been away he had become very frail and spent his last three weeks in hospital. He passed away at the Phyliss Tuckwell hospice in Farnham. After a family decision it was decided that Greg would stay with him during his final night. Apparently they shared jokes and shook hands just before. We all miss Grandad Stewart. It is so sad that he is not here with us any longer but he can sleep peacefully now.   Love and strength to his wife Lindsay, two daughters and seven grandchildren.

 

May Greg and I also take this opportunity to thank everyone who donated to Robyn’s appeal in lieu of flowers. We appreciate this gesture so very much.

I still have tons of thank yous – I lay in bed at night and they come to me, you know that feeling when you remember at 3am that you owe someone money and have done for about a month but it’s totally slipped your mind? No? Oh well, must be just me then! Well I remember and then come the morning I’ve forgotten….. Who organised Waitrose in Harrow? I cannot trace who got them to donate- let me know if you know!

Anyway, have a lovely weekend everyone,

I will update again tomorrow night as we are still in hospital and so much is happening…

Lisa, Greg, Tommy and of course our Binnie Bunny xxxxx