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Abbie was originally diagnosed with Stage 1 MYCN amplified
neuroblastoma in Dec 2002 at the age of 21 months. She had suffered from
weight loss and low grade fevers for a couple of months prior to the
diagnosis. Her HVA and VMA were within normal limits. A tumour the size of an
orange was discovered on her left adrenal gland. Originally it was thought
she had a Wilms tumour. During a biopsy Abbie was found to be bleeding
heavily into the tumour and so it was immediately removed along with her left
kidney. The biopsy confirmed that it was actually neuroblastoma and further
analysis of her urine showed raised Dopamine levels. A post operation MIBG
scan showed minimal residual disease around the primary site and no further
treatment given.
In July 2003 Abbie relapsed with Stage 4 disease - a tumour, (approx 5cm x
7cm), had grown again at the primary site and the disease had spread to her
bone marrow. She followed the rapid COJEC protocol. Her bone marrow was clear
after 4 rounds of the induction chemo and after the full 8 rounds her tumour
had completely gone such that surgery was not required. She underwent the
BuMel arm of the treatment protocol followed by radiotherapy and 6 months of
cis-retinoic acid.
In March 2005 Abbie developed a limp in her left leg following a children’s
party at a soft play area. Urine catecholamine tests at the time were normal.
She saw a number of doctors but as there was no swelling it was thought to be
a soft tissue injury. The failure of the problem to resolve led to an X-ray which
revealed a small stress fracture in her left ankle. After some weeks this
failed to heal and further investigations finally resulted in confirmation of
a relapse in June 2005. The disease had returned to her bone marrow,
left leg and a lymph node in her left groin.
Abbie has since received 4 rounds of the TVD protocol. After 2 rounds she
showed a good partial response - the bone marrow trephine and aspirate was
clear and she was left with residual disease in the left leg and lymph node
in the groin. After the third round of TVD she underwent a stem cell harvest
and after the fourth round of TVD was scanned with the results showing a very
good partial response and continued improvement with just 2 small
spots of residual disease remaining on her left knee and the lymph node in
the left of her groin.
Abbie commenced a further course of
TVD on Monday 21st November and on 9th January 2006 began a double MIBG and Topotecan
treatment. Her scan at the end of the MIBG treatment, (with the level of MIBG
within her body significantly higher than for routine scans), showed her
completely clear of disease. Sadly a follow up scan in April showed the
disease to be back with a number of hotspots. Abbie underwent 3 rounds of
cis-retinoic acid but starting suffering from symptoms again in early June.
An MRI revealed a tumour on her left hip. Abbie received 5 sessions of
radiotherapy to her hip and has now commenced a monthly chemo cycle of oral
etoposide and cyclophosphamide.
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