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 3^rd 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

The antibodies were yet again tolerated very well.  Robyn’s doctor felt that she should have Fentanyl as oppose to Morphine as her pain medication because of her previous problems with hallucinations.  The Fentanyl appeared to cover most of the pain caused by the antibodies but it did make Robyn extremely argumentative, moody and emotional.  Either that or she was getting really fed up with me twenty-four seven…..

 Robyn had the usual side effects that she suffers from – rash over her face and neck causing a fair amount of itching (but not Hives as she got with the IL2 and the antibody), general feeling of being unwell, absolutely no appetite, agitation, a slight retention of water,  and this time pain in her throat.  She said she felt as though there was something stuck in her throat and so she used the PCA button a lot.  When she was finished with the antibodies she then had ‘fast poo’ which kept us all on our toes!

Although she tolerated the above well it was also quite hard going.  Even though the side effects to the antibodies subside very soon after the infusion finishes, It did take her a few days to recover.  She was absolutely exhausted in the days following dishcharge and still found it difficult to both eat and drink.  Consequently she ended back in the day hospital for some fluids and this helped her on her way.  She was like a different child within an hour, asking for a sandwich and talking too much – Ah!  Robyn again! 

Her dose of appetite stimulant has been doubled as she had lost weight again but she absolutely refuses to discuss an NG tube.  If I could get her to agree to one,  just for a month, I am sure that I could pour so much goodness down into her tummy that even if she didn’t gain weight she would still be better nourished. 

Her physical therapy is coming along well too.  She has had another cast put on her leg for just under a week and yet again Robyn was moving around well.  Robyn’s problem with her right leg began in September when she had surgery to remove the tumour.   If the leg and foot was touched, she would suffer really bad neuropathic pain.  She then had her stem cell transplant (another 6 weeks in bed, very poorly at the Royal Marsden and in intensive care at St Georges) and this made the problem even worse.  She found her leg was more comfortable with her knee up towards her chest and that together with ‘foot drop’ caused much of where we are now.  As time went by Robyn couldn’t straighten her leg AND put her foot at a 90% angle – she could do one or the other though.  Robyn and her Physical Therapist, Abbey, work so hard to get her mobilised and ready to play with her friends again but every time she comes in for a course of antibodies she ends up going backwards as she is in bed for a week or two, unwell.  It is so demoralising for Robyn, Abbey and me!  Anyhow, now Robyn has a new ‘cast’ that she can wear, if she can tolerate it, during antibody therapy.  She can take it off if she gets Hives or is too unwell to wear it, so this is great.

Robyn’s next job is to put her heel on the floor and put her weight through it.  I think that when she can master this then her walk will neaten up alot because at the moment she is still very jerky so as to maintain her balance.

Robyn celebrated her 8th birthday whilst in hospital and she had plenty of visitors and the all important, Robyn’s favourite –  MATT CADABARA!!  Robyn loves Matt Cadabara (he is a student who comes to entertain the children in The Ronald McDonald House) and it was a fantastic birthday surprise.  Zoe, Stella’s big sister came in and they really enjoyed the magic tricks, and the balloon’s that Matt can twist into any animal you can think of.  That was a very memorable couple of hours and if you had taken my blood pressure during that time you may have had to hospitalise me but that’s another story that I’ll tell you in a couple of months

It was also Delores birthday on the 19th and both herself and Tom came to see Robyn and watch the magic show.  They brought cake, pressies, sweeties and birthday helium balloons.  We had a lovely evening (when my stress levels dropped!) and once again they helped make a difficult situation enjoyable.  Thank you to you bothxxx

I have got lots of big, massive, heartfelt  ”Thanking yous’ to do now….

To Emily, Joy, Annie and Susan – Thank you for that enormous beautifully decorated birthday cookie.  Yum!     

Jennifer, Thank you for the bright yellow, tasteful nail polish – she loves it! (I’m coming around to it…) and also thank you to the members of the Peace Lutheran church for the beautiful card that lots and lots of people so very kindly signed. 

Auntie Dee, Tara and Laura – miss you so much.  The tracksuit was lovely and it looks great on her but then, as we all know,  Robyn can wear a bin liner and still look good!

Maureen,  Thank you for the lovely basket of ‘Penn cuddlys’ .  She loves cuddly toys and these ones in particular were fantastic.  Thank you too for the $ and $ worth of dining vouchers!  What a wonderful pressie, you really shouldn’t have but we appreciate them so much…

Ellen and Sue.  You have always thought of Robyn and sent her little presents since she was diagnosed.  Even with your own cross to bear you continue to think of her.  I think of  you both often and Auntie Mel keeps us updated.   Look forward to seeing you soon – we’ll get Mel to take us out to lunch

Thank you also to the staff at the Ronald McDonald house who arranged a beautiful birthday cake.  Also thanks for putting up with us for the last few months.  Your kindness knows no boundaries and again, we appreciate everything.

Bernie,  Thank you for being you and thanks for the continuous supply of Chocolate.  Thank you for the presents, I cannot remember what they were because, as always,  there was too much!  I do remember a beautiful silver ‘R’ necklace though.  See you soonxxx

Amanda, My other long suffering  friend brought those little plastic pots of  spaghetti and beans – oh and tea bags!  Ever sensible Amanda but still managed to squeeze in some chocolate!  She LOVED her yellow t-shirt ! See you very soon tooxxx

To everyone who sent over cards and presents, you really do not know what it meant this year.  We have celebrated Nanny’s, mine and Robyn’s birthday in hospital and its pants actually. 

So,  Amanda went, Dad turned up, Mel turned up, Dad left, Mel then left but not before My two boys arrived.  I have found this month to be quite hard going.  There have been at least 10 deaths from children with Neuroblastoma and it is so frightening it is unbearable.  Little Sophie Atay lost her battle with NB.  This is the little girl who was on ITN raising funds to go to The States back at the end of the summer.  Sophie was too poorly to travel in the end and I think her passing hit many of the parents very hard.  Also I found out that 3 of Robyn’s little friends from The Marsden have recently lost their battle with cancer.  How can this be?  What world is this, that our family are now living in?

Tommy continues to amaze me and I am in awe of just how he copes with what life has thrown at him over the last year.  It tears him apart getting on that plane to go home and Greg deals with Tommy and resettling him admirably.  It would have crushed me leaving my family in another continent for over a month at a time at his age.  He is well aware of the seriousness of this situation and again he may well be a little ‘rough and tumble’ at times but he is actually far more emotionally mature than most boys of his age.  I am the proudest mother of  the most wonderful son.

See you all very soon I hope,  Lisa, Greg, Tommy and Robynxxxx

Robyn was discharged on the Monday morning and Greg, Tommy, Bernie and Tom came to pick us up.  We had so many giant helium balloons that I was concerned how they were going to come with us but I am still staring at them now (sigh…) so someone must have managed to transport them!

It took Robyn a few days to recover from this week of combined antibody and IL2.  Bernie came so that thrilled Robyn and took the pressure off of me!!  We had a lovely time whilst Bernie was here but much of our time was spent at the hospital

We went to the King of Prussia shopping Mall where Robyn once again went to The build-a – bear store.  The last time she went here was when Amber, Rick and Jade (Nanny’s friends who live here) took her and brought her her beautiful teddy named Sparkle.  They then so kindly took us to Maggianos, a fantastic Italian restaurant and we had a great time. The food was wonderful and Robyn has been begging to go there again ever since.

Bernie left us and then we were on our own for a week.  The time flies so quickly, we are at the hospital practically every day – usually for physical therapy.  A couple of weeks ago it was decided that Robyn would have plaster casts on both legs to fix her feet in 90% angles.  This was very painful for about 10 seconds on Robyn’s poorly (right) foot and because Robyn’s other foot was a bit tight, a cast was put on that leg too.

The change in her was amazing!!  That week she was walking, albeit in a slow and clumsy manner without any help and was actually playing hide and seek with the other children at the RMH.  I found this amazing and very emotional as Robyn has not walked since September the 8th – a long time!!  She had done so well that week that Abbey (Robyn’s Physical Therapist) decided to remove them and when they came off so did a little of Robyn’s confindence

On the plus side Robyn has really enjoyed some hydrotherapy sessions in the hospital pool and she wouldn’t be doing that if there were casts in situ.  Robyn finds physio very hard work but she has a very good relationship with her physio and she is so kind but very firm with Robyn-  the perfect combination.

Robyn has been through so much it is very difficult for her to motivate herself to do her exercises.  When I think back to the early days of physio both here and in the UK,  I remember myself wondering whether Robyn had given up on the idea of ever walking again and I could see in her, almost  an acceptance that this was going to be her life now…

In hindsight I now realise that this was the poor child recovering from the most aggressive treatment that the medical world can throw at a human being.  Transplant, as they say here, sucks.   I have been here too long!

Robyn had her transplant at the beginning of October and it is now the beginning of March – over 5 months on and she is still frail, anorexic and fragile to look at.  She is however, eating more, has an improved colour and is gaining strength by the day.

We had a fabulous week with Bernie and it went by too fast!  We were so glad she could come and realised that it was really hard for her and George and he is a credit to her for being so understanding.  It’s a long way for your mum to travel if you’re not used to it and you’re 10.  Well, hopefully we will see them soon- in about a month and a half if Robyn’s Doctor agrees for her to go home for a couple of weeks in April.

Tom continues to be such a support to us.  We went up to his house for dinner and Delores (Tom’s wife) cooked us roast potatoes.

Well not JUST roast spuds- chicken and vegetable too!  It was delicious and Robyn had such a wonderful time playing with Molly, Tom and Delores’ Golden Retriever.  Robyn adores  Molly.  We had such an enjoyable evening and just as Robyn was about to go to sleep that night she said “Actually, Delores roast potatoes were delicious”.  I agreed with her and she then closed her eyes and went to sleep!

The Ronald McDonald house is also still putting up with us and continues to provide delicious food every evening.

Consequently, I continue to balloon and I will bore anyone stupid enough to stick around me long enough about my struggle to fit into my two remaining tracksuit bottoms that did fit…Is  normal to 3 chocolate brownies for dessert?

So for those of you who may be reading this blog because they are thinking  this therapy may be suitable for their child,  this course was harsh but manageable for Robyn.  If your child has a hickman line then access for the drugs should be ample.  For those with one Port – please remember that a hickman line or a second port will probably be necessary.

For those of you checking in to see how we are doing, well we are very much up and down.   This is a very strange journey.  I still cannot believe this is happening to us.   I am very frustrated and upset by the plight of children with Neuroblastoma in the UK and all I would like for them is the same opportunities with regards to Neuroblastoma treatment that the children here in the US have access to.  I live in constant fear for Robyn and I know that as a parent with a child with Neuroblastoma (or any paediatric cancer) I am not alone.

Robyn so desperately misses her class mates and I want her to get back  to school although I am frightened that her mobility will not be as it was before this nightmare by then.  It has been 10 months since she has been to school and I worry how she is going to settle.

I worry, not like I did when she started reception, this is far worse!  I also worry about her finishing treatment.  I hate for her to be pumped full of chemicals and have needles stuck in her and to be prodded and poked but at least this is all keeping the disease at bay.

I do know that,  from speaking to other parents, this is a normal concern.

Thank you to all those people who continue to raise money for Robyn.  It doesn’t go unnoticed!  Many thanks to the Cuckoo Cafe in Hanwell,  All the girls and customers at Angela Francis Salon (as usual!).  A huge thank you to  Olivia’ with her Hip Hop with livvy’.

Genevieve is doing a Bag2School on the 31st March, this time at St Augustines- Thank you Genevieve for organising this and thank you to everyone in advance for any contributions.   Thank you to Sara Stevens and her colleagues from the Cardiff Nuance team who have been raising funds for Robyn too     Marie for her 10k run – wow good for you! Hopefully the next time you plan something like that, I’ll be doing it with you!

I’d also like to thank Gary, a friend of Fiona’s and a parent at St Augustines for asking Fern Brittan to ring Christian O’Connell at Absolute Radio (was Virgin) to see if they could get a donation for Robyn’s fund. I don’t know the outcome to that but a huge thank you for trying.

Thank you to Sharon Fagan-Cox who organised a raffle at Stanstead – Is Jonathon whipping you all??

Cara, I thank you too for doing a 10K run for Robyn and I can’t wait for a time when you need to give her hair a trim too.

I know there are a few runs in the pipeline – please just keep reminding me on Robyn’s face book appeal page….

Many of you know that ITN came out to film Robyn. They were supposed to come and then the Haiti earth quake happened. It was felt that the article wouldn’t get the exposure it required and so was delayed. We were filmed in the hospital and at the Ronald McDonald house and those whom know me realise that I hate this. I get very stressed as I worry that Robyn is going to hear the wrong dialogue and that would crush me and frighten her. This footage may or may not be used in the future but if it is, I hope that some good comes out of it.

I started this blog a couple of weeks ago and I can’t seem to finish – it is boring me now!!

We are due back in hospital on the 17th March.

And if anyone has any ideas as to why some of my blog is coming out in different size, then I’m all ears!!

Love to everyone, Robyn and Lisa xxx

Yesterday was awful.  A rotten day.  She had many side effects from the antibody and IL2 but the worst thing about the day was yet again,  her IV .  This was salvaged on a 2 occasions but finally had to be removed as it was causing too much pain and I think it had moved slightly rendering it useless.  The nursing care Robyn has received since she began treatment here has so far been excellent and I felt that this was really magnified yesterday.   Robyn’s condition changed by the half hour so there appeared to be someone constantly attending to her.    Her nurse yesterday, Laura, was fantastic and has built up a great relationship with Robyn.   She ‘gets’ Robyn’s Britishness and Robyn is learning to trust laura even when the situation is very traumatic.  All the staff who cared for Robyn yesterday were great but for me, thank goodness Laura was there….

So the IV team salvaged Robyn’s IV twice but it finally had to come out and after trying three times they didn’t manage to get a vein for another. (I think they may only be allowed 3 attempts).  I cannot tell you how dreadful this was.  Here we are, in a position where the therapy that Robyn is receiving is supposed to be causing all the problems and it’s the IV access that’s so dreadful!    So plan B was to get someone from the ER to come up – so that would be casualty or A&E to you and I the idea here was that they may manage to find a suitable vein as they have to put in cannulas very quickly in very demanding situations.   Plan C was to get someone from the neonatal baby unit who was used to finding tiny veins.  Well, plan B worked and with much drama and Robyn telling people exactly where to go  (those poor IV nurses…) it was done and she now has a new IV in her arm as oppose to her hand or wrist.   Somewhere during this day she also suffered from dreadful stomach pain, leg pain hand pain and  shoulder pain.  Plenty of morphine and hot packs really helped and this just left the vomiting, swollen eyes, hives and itchiness.  All of these side effects were really well managed but after the iv drama she had, quite rightly, had enough.  Last nights hives were the worst I have ever seen them and she was extremely itchy and agitated.

Robyn is weighed twice a day because another side effect that really needs observation is fluid retention.  Apart from the swollen eyes and cheeks this isn’t proving too much of a problem.

Unfortunately Robyn has hardly eaten since Thursday morning and when I think of all that hard work trying to put on a little weight I feel slightly disheartened.   On the other hand,  yes, I desperately wanted her to gain some weight but more importantly I also wanted her to have something to fall back during this demanding therapy.  I hope the little she had gained will give her this cushion.

Every night during this treatment I try to blog the happenings of the day.  Yesterday I was too upset and too tired to because of what had occurred.  Today has been demanding too with the same complaints as yesterday.  Robyn woke with very swollen eyes and think that I actually saw her right eye wander inwards towards her nose on a couple of occasions.   She has also had pain in her hand (bottom of thumbs), legs (knee area)  and inside her ears.  She has been sick once and was just thoroughly miserable for much of the time .  The hives haven’t made an appearance today so that was a blessing.  If I think of any other side effect I will add them tomorrow. 

I have tried to describe what is happening to Robyn in very basic ‘parents’ terms.  My aim is not to scare monger but to let people know what they may expect with this therapy.  Yes, so far, there have been times that it has been VERY hard on Robyn but having problems with her port or IV has proved worse!!  If you are considering this treatment for your child then they would have gone through high dose and transplant.  So far, for Robyn, this is nothing like that.  Thank goodness.   

Greg and Tommy spend much of the day with us.  Tommy has spent much of his time here sitting in a hospital room but he has been fantastic.  She even has half hours when she feels ok and they ‘link up’ ? on their DSs’   and in the middle of all this drama they still manage to have a spat!! 

Bernie arrived this afternoon and so this has cheered Robyn up.  Apparently, Greg says Bernie has brought hardly any clothes – her suitcase is full of chocolate.  Double deckers, cream eggs, mini eggs, crunchies, flakes…..   I love Bernie!

I’m tired now, cannot spell, need some ZZZZZZZZZZZZZZZZZZZ’s

Lisa& co    with lovexxx

One of the biggest problems that Robyn has to deal with is access.  She only has a single lumen port and this week of the anitbodies requires more access than Robyn’s little ol’ port allows.  Even last week when she only had the IL2 infusion for 4 days an IV had to be put in situ ‘just in case’.

Robyn complained of pain when Benedryl was been given to her this afternoon and for a few minutes there was a concern that the IV wasn’t working properly and would therefore need to be changed.  She hates this and so I hate this.    An IV nurse came and had a really good look and it was decided that the stinging and burning pain that Robyn had felt was more than likely the Benedryl as this often happens when this drug is infused.  Phew!!

This is where the ‘downhill’ bit comes in….  Massively sick 3 times,  aching all over, blurred vision (caused by the anti-sickness), sore throat, constant thirst, tummy pain,  itching, red blotches over face and neck and generally feeling really rubbish.  All of the above can be usually be sorted by tweaking the medication and this is so well managed.   The worst of all this?  Robyn’s hallucinations and nightmares caused by the morphine.  She was feeling so poorly and the Benedryl, Morphine, Gabapentin and the other medication (can never pronounce it’s name) that is an antihistamine with an appetite stimulating side effect all make her so sleepy but every time she slept she woke screaming.  Then, in between these bouts of disturbed sleep, she would be having what appeared to be a lucid conversation with me until I would notice that she’d said something odd and I would then realise that she wasn’t fully awake and coherent. 

So it’s been a horrible day.  I never expected this to be any better to be honest so I don’t know why I’m so surprised!  I am so upset though as I don’t feel I can watch her suffer anymore.  This week she actually started to look stronger, was eating fairly well and had even taken a few untidy, staggering steps forward – ON HER OWN!  She had given up her crutches for Lent and even though physio often means tears of frustration and pain, she is quite clearly proud of her own progress.

Today I saw a very down and negative little girl who was blaming herself for being ill, saying that she wished she had never been born and telling me that she was very unlucky.  She was so dreadfully upset and I don’t think her state of mind was helped by the medication she is taking today.  She said she just wanted to be normal.  She said she was ‘on her own’, that she had such little hair and that it wasn’t growing fast enough and that all she wanted to do was to go to school, play with her cousins and get a dog to take for walks

Now, I don’t know about the dog but the rest of it isn’t too much to ask is it?

Well,  that’s day one of week two of the horrible mix of drugs and I have to say that it’s been dreadful in spots.  I try to write an update every night when we are it hospital for this treatment (last week I didn’t as the 4 day infusion of IL2 was so uneventful) but I am so tired and drained by today and how distressed Robyn has been I’m actually finding it hard.  The nurses have been absolutely great as has the lovely doctor. 

So,  it’s been a rotten day but every time a new nurse comes in Robyn reaches over to the top drawer of her bed side cabinet and pulls out her stickers.  She then proceeds to put a tiny sticker over the face part of the photo on the nurses security badge.  This could be a sticker of Mickey Mouse or a pig or even a piece of cake.  Very strange behaviour… especially when she said to the nurse “Would you be so kind as to lower your badge please?”.  I was giggling too much to correct her bold behaviour!  You see? devil of a sense of humour,  mixed with a large amount of morphine…

It is now 1am and the bad dreams and hallucinations have only just stopped.  I am shattered.  Tomorrow’s another day and we have Bernie to look forward too on Saturday    (well, it will give me a break…)

There are so many people to thank that I think I am going to dedicate one day’s blogging as a ‘Thank you’ blog.  Please, please if I haven’t acknowledged something that you or someone you know has done to raise money for Robyn, understand that we are in awe of the wonderful ways people have helped.  Everyday I think that if it wasn’t for you and you and you! (imagine me pointing here!)  we wouldn’t be here.

Right,  I am off to bed to dream about roast potatoes.  American people do not know about roast potatoes and they are soo missing out on decent bacon.  Would love to introduce them to Waitrose bacon, maybe the maple syrup or oak smoked kind…. ummmm…

Here’s hoping tomorrow will be better for that beautiful little girl of ours.

Love lisaxxx

Robyn has had no side effects from this infusion of meds – apart from being sick a few times but this could have been because of eating too much as oppose to a side effect of the IL2 – Yes, Robyn has her appetite back!  (with a little help for a tiny amount of appetite stimulant) At times she tends to over do it though…  She is also doing very well with her stretching and did in fact manage to ‘walk’ a couple of paces yesterday and today.  I may not sound as excited as you’d think I’d be about this but I need to make sure that she is not literally hopping  along as this isn’t walking as she should be.  She needs to get her heel right down on the floor in order for her to walk as she should.   I will now tell you that I did have tears in my eyes to see her moving without my help or her crutches across the room - It has been over 5 months since my warrior princess has walked – 5 months  too long.

Today we had a very stressful half an hour as Robyn’s portacath isn’t behaving as it should and it started to leak (The IL2 was being infused into the port).  The nurse had to de-access the port and they couldn’t put any magic cream on the area to numb it again as there would have been a risk of introducing infection.  Robyn was so upset and was screaming at the nurses to put some cream on first.  She is not stupid,  she knew this was going to hurt and i am not going to lie to her and tell her otherwise or she will never trust me again.  So the nurses had to do what they had to do and it did hurt but it was over and done with in no time.  We were both exhausted after,  It must be the come down after the adrenaline!  It is at time like this when I get very upset and angry.  Why her? Why Neuroblastoma? And why is the bloody port not funtioning?

Robyn has been talking about school a fair amount this week,  she misses school, she misses her friends and you can clearly tell when you speak to Robyn that she has spent far to long trapped in a room with me.  She is still a very innocent 7 year old but she has a sense of humour WAY beyond her years.  She has me in fits, she is quite wicked!  She does sing me beautiful songs that she learnt in French class with Mrs Bray though.  I really do enjoy this but have you ever heard Robyn sing?  Oooh it’s painful!

We are off ‘home’ (RMH) hopefully tomorrow so we can spend some time with Greg and Tommy before Robyn has to be admitted again (Wed) and the boys go home

So, for those reading this blog because they are planning for their little  (or big!) person to have these antibodies – this week has been ok .  Next week is the one I am very concerned about as I have been warned that the  combination of IL2 and antibody can be quite hard on the child – but saying that we have met a beautiful little 5 year old girlie called Brooke who is having that exact combination at the moment and I keep walking past her door expecting to see her really poorly but she is sitting up watching TV and chatting!  So there you have it, every child is different…..    John and Vikki, I know you are reading this with baited breath!!  Hope you enjoyed your night out by the way, let those who judge cope with a child with this sort of cancer and see if they do things any differently than you do.  You are all doing so well

We are so looking forward to Bernie coming on Saturday,  I may as well just go and stand in a corner on my own for the duration of her stay as Binnie will have no time for me!  We really do miss Nanny Pauline though but we had her for one extra day as her flight cancelled because of the snow blizzard.  Now, that’s another story, I have never seen anything like it!  What a huge amount of snow!  but it gets cleared so quickly and life appears to carry on functioning as soon as possible – no complaints about salt shortages here

A little Star Wars fan who really needs the force to be with him at the moment is Ashley who relapsed just before Christmas.  He is in hospital at the moment and his family are trying to sort out treatment options for him.  Please pray for this little man and for Amelia and Sophie who are very poorly at the moment because of this disease.  And of course please, please pray for my Binnie, my special long, gangly, perfect giraffe of a baby girl.

love to you all, 

Lisa and Robyn    xxxxxx

I’m writing in the morning as Robyn is still asleep so let us hope that my spelling and grammar is better than when I try to blog at one o’clock in the morning. 

On Tuesday, Robyn’s first full day out of the hospital after antibody treatment, she hardly ate or drank a thing.  All throughout the therapy she drank (and had IV fluids) but hardly ate at all.  This does concern me as she is very slight at the moment.  I have to make sure that I encourage her to eat without causing an issue as I don’t want her to see how concerned I really am.  This will just cause everyone anxiety!  Its seems that every time Robyn starts to regain any strength, along comes another treatment to knock her back again…

On Wednesday morning, when Pauline and I tried to wake her for a physio appointment she was very grumpy and unco-operative.  I noticed that she was very dark underneath and around her eyes.  She just didn’t look well.  I needed to go to the out patient clinic as I had run out of syringes to give her her GMCSF injections and Robyn had a physio appointment.  She was seen by her nurse and doctor and she is now starting on some medicine that will hopefully stimulate her appetite.  More importantly, they gave her a bonus of fluids and we then had Robyn back again!!  (well nearly….)  Needless to say,  her physio appointment needed to be cancelled and this just sets the ‘learning to walk again’ further back because she achieves so much at physio – far more than she does with me.

Yesterday evening Robyn joined in with ‘knitting with Judy’.  Judy is an extremely kind and incredibly patient lady who comes in and teaches children who are interested how to knit.  Robyn appeared to spend more time talking and less time attempting to ‘plain stitch’ – What a surprise eh?

This morning we thought we would let Robyn sleep- in seeing as we had to be really strict with getting her to the hospital yesterday.  We had arranged to meet another mummy,  Nathalie and her little daughter Naomi for lunch downstairs at 12 noon and so at 11.30 we really had to start waking her up.  She was VERY difficult to rouse and when she eventually did open her eyes, she was very distressed and tired.  The only way we actually got her to wake was to get her brother and cousins, Emily and Jessica on Skype.  Luckily they had all just finished school!

We enjoyed lunch at a place called chick fillet (sp?)  -like a Kentucky but really nice.  Natalie drove us all home and the minute the car started both girlies fell asleep.   This must have been at about 3pm and we couldn’t wake Robyn until about 8pm.  Somewhere in between me whinging and worrying to Pauline about why she was just a tad unresponsive I finally remembered the new medication that she had started the night before and that morning.  This medication may stimulate the appetite but it is an antihistamine and can make you very drowsy.  I did say to Pauline that you wouldn’t know whether it was working or not as the child slept all the time.  When would she be able to eat??       When Robyn eventually did wake (with a little help from a loud I- carly dvd right by her face) she demanded food and made me go to the Boston Market to get her fresh rotisseried chicken and green beans….  she then had a whole little carton of fresh orange and 2 little slices of bread followed by nearly one stick of twix.  Phew!  Is this meds working already or was it coincidence??  We’ll see but that’s a lot of food for my little lovely!!

It was lovely to see Sabra here with beautiful little baby Brayden, in for his next round of chemo and a joy also to meet Nanny and Grandad too.  I know Brayden’s Auntie Julie also checks Robyn’s page now and then so – Hello Julie!!  Sabra brought Robyn a fab Hannah Montanna hair piece, mic and accessories – Thank you!

This is not the same lovely Julie who spends much of her time running us back and forth from Children’s Hospital bless her!!   She is so very kind to us too.  Always bringing Robyn food that she thinks she would like.  I so appreciate that when we are so far from home.

This is a super place to be if your family is being tested to the extremes by childhood cancer.  I had the pleasure of being introduced to the lady who founded the first Ronald Mcdonald house (I believe, here in philadelphia).  A lady called Dr Evans.  She was an English lady- born in York who has lived in the States for 40 years.  She was also a Paediatric Oncologist and it was her vision, her dream, that families in predicaments like ours could access a support such as the Ronald Mcdonald House.   This wonderful house now offers shelter and a warm, safe environment to all children (not just oncology families) who have to travel a long distance to receive treatment at CHOP.    

Thank you Catherine (once again!) for the donation from your team at Hendon.  I now read that you are going to do a sky dive!  Are you mad?? 

Can I say a huge thank you to the Met Police.  There are far, far too many of you to mention that I wouldn’t know where to begin.  I can have a very black sense of humour at times but I often say to my friends that if your child is ever diagnosed with a paediatric cancer than you would be very fortunate to have the Met as your employer…..   I think I can safely say that collectively, the Met police were our biggest donor.  And it still keeps on coming in!!    I am so out of the loop here that I must find out about the tower 42 climb -   again a huge thanks to the ladies and gents who took part for Robyn.

Marie has been an unwaivering support to us (and still is) helping co-ordinate Robyn’s facebook appeal page whilst raising funds,  making sure people knew what they were doing and dressing up as a baby complete with dummy and nappy when the function dictated!!  Thank you Marie…

Thank you to Angie and all of the girls from Angela Francis.   Angie helped with all of the fund raising and handing out buckets and collection pots but Angie also helped Robyn and I on one of our most difficult and lonely days.  Angie helped Robyn and cut her hair when it started to fall out in clumps and I have tears in my eyes remembering how bad that day/days were.  Losing your hair is awful.  There is no getting around it.   Auntie Mel tried to help around that time too – bless her.   Angie cut her hair and Robyn, who has a little elf like face anyway,  looked better.  Thank you Angie.  We will never ever forget what you did…

Thank you also to Genevieve and Johnathan who in the most dreadful days of high dose, transplant, intensive care and the realisation that we did indeed need to fun raise a massive amount of money urgently, quickly set up a website -  your using it now and I think it’s great! and all the computery things that we needed to get started.  They tolerated my gormless “I don’t know”s when asking me questions about how I wanted things to be set up and they just got on with it.  Thank you so much.

I am still trying to catch up with all the text, emails and massages.  Please remember that at the moment I have the concentration span of a gnat and that every time I sit down with good intentions of responding to the back log,  I end up going to make yet another cup of coffee.  Apologies if I haven’t responded yet – please do not take offence

Oh and one last thing.  Robyn had a mould taken of her leg and foot the other day and even though it is very difficult to put on, it keeps her foot at a 90 degree angle so as to help with the ’stretching’.   More about that tomorrow… 

I’ve had a little spat with my faith at the moment but please, if you pray, please say a special prayer for 2 little girls battling the same awful cancer as Robyn.  Sophie, who doesn’t appear to be responding to the chemo after she relapsed about a month ago and then just a few days ago – Amelia.  Amelia is Robyn’s age and the only other ‘big girl’ I know with NB.  I’m sure there are others but I think aged 2 is the average age for Neuroblastoma diagnosis.  Our Robyn has this disease!  How can this be happening?  It is for this very reason that I want and need to continue to fund raise.  We have to make sure that we can access treatment for Robyn in ANY eventuality.

Lisa & Robynxxxx

Tom visited today and brought Robyn a lovely teddy-bear (where am I going to put them all??!!)  and some DVD’s as ours don’t work over here.   He also brought me in some Cadburys chocolate as I was complaining about the chocolate that is on offer here.  I told him that I needed some ‘real’ chocolate.  Now I have about 5 big bars…. yum….    You’d think I really enjoyed my chocolate but I can usually take it or leave it.  It’s when you KNOW you can’t get Cadburys it ends up a must have!

Hopefully we will be able to go home tomorrow.  We have been stuck in this room since Wednesday night.  Robyn has only got out of the bed to be weighed x2 a day and to use the commode.  It will be so wonderful for her not to be attached to so many wires and this week I am going to spoil my special little girl rotten.

What I am typing at the moment is actually quite boring.   I think, in this situation, boring is good

I’m missing my boys xxx

Lots of love,  Lisaxxx

She had slightly low blood pressure in the afternoon- this was rectified by giving a small amount of extra fluids in her line and pain hasn’t been a problem today.  If she complained of pain I reminded her to press the extra morphine button and this kept everything comfortable.  I am so frightened of her experiencing pain and I am so thankful when she has had a comfortable day.

It was Pauline birthday today.  I should imagine that she has never, in all her years,  had such an uneventful birthday and I did feel bad but Robyn and I are going to make it up to her next week.

Robyn had a very long sleep today.  I suppose the morphine (for the pain) and the benadryl (as an antihistamine ) make her very tired.  I prefer it when she sleeps and the time goes by and she isn’t dwelling on how ill she is feeling and of course in a selfish way, it’s easier for me to observe.

It was lovely to speak to my cousin Laura today -Skype is a Godsend to us at the moment.  Robyn wants to speak to Auntie Dee and Tara tomorrow please!

Lisaxxx

We have had lots of visitors today.   Julie, a lovely lady we have met at Ronald Mcdonald house who is here with her daughter Jennifer  (having physical therapy treatment at Children’s Hospital),  Tom and then later in the afternoon Maureen and Mark who have also been beavering away behind the scenes to help our family now that we are in Philadelphia.

Once again, Robyn has tolerated the treatment fairly well.  Her mood has been very up and down and at times it seemed like we had ‘Steroid Stella’ back again!  She has been VERY talkative -more so than usual but could easily become agitated because at times she was very itchy.  Her throat and ears were the main culprits but she also had the same mild rash on her face as she did yesterday.  Again, this would come and go.  At about 7pm Robyn’s hands became very painful and she hit the morphine pca pump along with some hot packs.  The pain dissipated after about an hour.   She had been spiking a mild temperature for a few hours on and off so this evening blood was taken from her port to be cultured.  From what I can understand this is more to ere on the side of caution as the fever is more than likely caused by the antibody rather than a bug.  I think the antibiotic has started as I can hear the pump bleeping.  So that’s day two over.  We have had 2 nurses caring for Robyn today, Maura and Laura.  Robyn thought they were great and so did I.  She said she wished she had called her wigglys Laura and Maura!  We have a nurse called Jen working with us tonight and she is fab too.  So Robyn, my beautiful Warrior Princess coped fantastically.  I love her so much and I only wish I had her strength.

It’s Nanny Pauline birthday tomorrow and I haven’t got her a blinking card.  Shame on me…  Happy Birthday Pauline!!!  You are so good to us and I promise we will celebrate next week.

Robyns’s snot test (yes, they took a sample of snot!) just came back as Rhino negative (or positive?) can’t remember.  This is the common cold so hopefully this is ok.  The spelling for that is soo wrong but it is midnight    Love to everyone,  Lisaxxx