Anna-Maria's story
Anna-Maria spent her 3rd birthday in Kingston Hospital very poorly and
with high temperatures she was then transferred to St George's in a
critical condition and we then had a bone marrow aspirate result showing that she had Leukemia. The devastation which we felt was one which has diluted over the time of the 2 years and 2 months of treatment and is nowbeing replaced by a sense of fear and trepidation whilst at the same time allowing ourselves to breathe slightly easier as we take the small stepsinto remission with the cloud of worry about the cancer coming back but whilst remaining positive that a chapter has finished and we cannotcontrol the future.
The treatment itself is exhausting for the child and for the family
involved too. Many disturbed nights in hospital cause utter exhaustation, frustration, tears and worry. At the beginning of treatment you feel on a roller coaster never knowing when your child will have to return to hospital and blood test results become so important in determining so many things from being able to go home from hospital, to whether your child can do the things that people all take for granted.
For our family this was made harder by Anna-Maria being diagnosed as having Autism 5 months after her Leukemia diagnosis. Our world tore apart again and the stress, pain and work involved has at times been unbearable as both conditions are incredibly tough and frustrating as is the endless paperwork and bureacracy involved in having a child with special needs.
Anna-Maria has endured so many general anaesthetics, hospital stays, lumbar punctures, blood tests, injections, people examining her, routines changing at the last minute. We have been so lucky to have had the majority of her hospital time at Kingston Hospital where everybody from the medical team to the play specialists to the cleaners always have a smile and a shoulder to cry on and display such love and affection for her that hospital has truly become her 2nd home for the past 2 years.
Momentum have supported our family from day one and we feel so grateful to the charity. On her 3rd birthday they gave her a little dollhouse which she still loves playing with. When we first got back home from the intial diagnosis we received lots of beautiful touching emails from other families who had been in our situation and gave us support, information and hope. We were able to spend the following Christmas away from all the memories of the year before in the Momentum log cabin which was such a special time. They have been a shoulder to cry on and the celebratory team when we have had good news about schools or medical results. The sensory room on the ward has been an oasis for Anna-Maria after medical intervention, a place she can calm down. They also helped us to pay for the first few sessions of her specialist Autistic nursery until we got funding which meant she could access help for her Autism immediately.
On the 1st June, Anna-Maria had her PICC line removed which symbolised the end of treatment for the family.
Here's what Anna-Maria's mum, Natalie had to say:
Well yesterday was the day that Anna's line/wiggly came out. We have added photos to the
Caring Bridge website.
Anna-Maria decided the day before what her special breakfast would be spaghetti, peas and sardines followed by chocolate ice cream which she and Fernando both ate together. This was totally amazing as she'd never usually eat anythingbefore 8,30 but she understood it would be magic sleep today and she had to eat before 7.00. She then watched all the t.v/dvd's she wanted. She understood today was a 'special and different day'. We succeeded in making the starving before the operation as stress free as possible.
The whole procedure went really well and she was a complete and utter super star. She woke up from magic sleep and wanted to put wiggly in the bin straight away and eat her cake. She then had such pleasure in putting it in the bin in front of Drs and nurses that she knows and then cutting cake for them and eating eating eating and saying 'its goodbye wiggly cake'
Today Anna is feeling tired but happy. We are all relieved that yesterday is over.
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