We met with Dan, the Radiotherapy Consultant, and Dr Peet at BCH yesterday morning. We feel much clearer now about everything, and therefore ready to take this step. Poppy will be having a mask of her head made within the next couple of weeks, then she will begin her treatment in 3 or 4 weeks time. It will be a 28 day course of radiotherapy, so that equates to Mon-Fri for 5 full weeks + 3 days. Poppy will need to go to the QE hospital in Birmingham each day, her appointments will be first thing every morning. We had to discuss all of the possible side effects, and then sign a consent form. The consent form contained some nasty stuff, but did not say 'death' as a possible risk this time - which is something we've had to sign against many times before. Here are the risks...
Short Term Side Effects
The initial side effects that Poppy will have are tiredness & some hairloss. The hairloss should be isolated to where the radiation beams enter her head, so mainly across the front of her head. This hairloss may be permanent. The skin in this area will be very sore during the treatment. Poppy's tiredness will increase as the weeks progress, at 3 months after treatment she may again experience extreme tiredness. We will let Poppy go to school if she feels well enough, even if it just for a few hours each week, just to help her to keep a routine of some sort. Poppy currently has no side effects from her tumour, but the radiotherapy will cause swelling & therefore Poppy may experience some symptoms. She may also feel sick during her treatment.
Long Term Side Effects
Due to damage to the pituitary gland, Poppy will need hormone treatment for the foreseeable future (growth hormones as a child, but also hormones for her thyroid, etc). We know that her tumour can cause damage to her pituitary glad anyway, so this is not unexpected news. There will be some damage to Poppy's learning ability - specifically to her memory & problem solving skills. However, we feel this is a risk we have to take at this point to help Poppy. There is a risk of damage to Poppy's good eye - she may develop a cataract, but we see this as something that can be treated. There is a small risk (5%) that Poppy will develop secondary cancers in the area radiated in the future - again, scary stuff, but we feel it is a low percentage.
We are now going to start some play therapy for Poppy, as we are hoping that she can get through this without the need for a daily GA. We need to do lots of work on lying still! We are very lucky that Jason & Claire, who work in the radiotherapy team at the QE, have a son in Poppy's class at school (such a strange coincidence!). They have very kindly offered to talk to Poppy & her class about what will happen. This will be such a help to Poppy & we are extremely grateful to them & to Mss Taylor (Poppy's teacher) for being so caring.
Me & Brian will need a considerable amount of time off work during this treatment. We are both incredibly lucky to work in fantastic places where we know this isn't an issue. I would like to thank Helen (the head), Mick (chair of governors) & all of the staff & parents at Bird's Bush School - they are so understanding & supportive. I am very grateful to them all & so pleased that I work at such a fantastic school. Asda are just as great with Brian. He is currently training for his new position at the Leamington Spa store. He got to the training centre today & filled them in on the meeting yesterday - and they promptly sent him home, saying he should be with his wife!!! It really choked Brian up having them feel so concerned. As Poppy is at school today, it has really allowed us quality time to talk things through with her out of earshot.
Poppy, as always, has been an absolute star in all of this. I had a really long list of questions yesterday, which I managed to get answered very clearly. However, Poppy then added 'I haven't asked my question yet!' - so she turned to Dan & asked 'What does the machine look like?' - bless her!!! Luckily, they had photos to show her & put her mind at ease. She then said 'I've got another question....did you know I've got a kitten?' Dan then told Poppy about his two cats!! So, that's a great starting point to building up a trusting relationship for her.
We'll keep you all posted about Poppy's treatment over the coming weeks. Thank you to everyone for your kind emails. I'm so sorry if you've emailed me & I haven't replied yet...I've got a list growing by the day!!! I will catch up ASAP. Thank you for your thoughts & prayers.
On a lighter note (very apt!)...the sponsored slim is going really well!!! It was my week 5 weigh in today & I've lost 12lbs!!! Our group total is now 6st 7lbs!!! Fantastic!!! I've raised £450 so far...just gotta keep it going!! I certainly feel motivated now!! Thanks to all who have sponsored me & to my great online slimming group!!!
I hope this email finds everyone well. Poppy sends big hugs to all!!! I've attached 2 photos of her playing with Ruby!
Love to all,
Lisa, Brian & Poppy