Raffle for Avaya’s fight against Neuroblastoma

Yesterday was a big day for Avaya!! After 4 years (half of her little life) of having either a Hickman line or a port, she finally had her port removed. This was done under general anaesthetic and by making an incision in her chest where they went in previously. Avaya hasn’t needed to use her port for nearly a year for chemo / immunotherapy but previously she hasn’t agreed to having it taken out. It has been her comfort blanket so to speak, as any time she’s needed IV medicine or bloods taking, they could access and use her port. Having it removed was the best thing to do though as whilst it was in her chest, she was at constant risk of getting an infection and it’s meant she has had to be careful with activities for a very long time. Avaya as always was a true champ in hospital yesterday, did a music lesson in hospital school whilst waiting to go down to theatre and was up and about less than an hour after being back on the ward. She has a sore chest now but it should be fully healed soon enough.

The week before last Avaya had her 3 monthly MRI scan and urine catecholamines test. The MRI images showed that the tumour remains stable and her urine results were normal 🙌. This was what led to the decision to have her port removed now. We will still have scans / urine tests and clinic appointments every 3 months with her amazing consultant to keep an eye on things. Avaya is well in herself at the moment, the only thing bothering her is her hips from time to time. We know she has what they call AVN to one hip and possible to the other as a result of chemo. So her consultant is going to do some checks into looking at her bone density and refer her to the paediatric orthopaedic team. We have known for a while that this would likely happen but until recently it hasn’t caused any pain or issues. In true Avaya style she won’t let it stop her doing what she wants to do!!
Thank you for everyone’s continued support, love and kindness ❤️💛
The picture is yesterday when her port was accessed for the last time ever! X

update 💛

Last week Avaya had an MRI scan, the first one since she’s been on no treatment. I am very pleased to say that the results show her tumour is still stable, no growth and no new areas. This is what we have been hoping for. Avaya’s consultant saw her yesterday and is really pleased with how well she’s doing and how well she’s looking, she’s actually never seen her look as well as she does in the 3 and 1/2 years she’s been treating her. We are still waiting for a specific urine test result and a thyroid blood test to come back but so far so good. 🤞🏻

2 posts in 1 day but this information needed a post of its own.
After doing some reading last week about thyroid disorders, the list of symptoms make me question if Avaya could be suffering with it. She has been more tired and pale than usual, her skin and scalp have been really dry, she has become quite moody and irritable, she has been feeling the cold more, particularly in her hands and feet, her concentration span has reduced and her growth (in height) has slowed to almost nothing in the last year. All of these things can be side affects of treatment but we have family history of thyroid problems and Avaya has had a lot of radiation treatment which can affect the thyroid as well. I asked Avaya’s consultant if we could test her thyroid function and she agreed, despite the fact that it could be all treatment related. A simple blood test revealed that Avaya does in fact have an issue with her thyroid. Her body isn’t producing enough thyroxine naturally, so it has been agreed that Avaya will start a low dose of thyroxine medication and have her e levels checked again in 6-8 weeks. They don’t know if the reduced levels are treatment related or a genetic issue (due to our family history). Usually thyroid issues are a lifelong condition and will require lifelong medication and close monitoring. However if it is a side affect of treatment then there is a chance it may level itself back out after treatment has finished. Obviously it may be quite some time before we know either way so for now Avaya will have the new medication and the doctors will keep a close eye on what her levels do. (No judgement on the fact she’s drinking Pepsi max, it was the only things she’d swallow with her sore throat!) ❤️