Hi all! 
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