Blake’s Story
Blake’s story begins on the 17th April, 2010.
My son Blake had what seemed like a harmless headache for 2 weeks. He also started to sleep more. I told his Dad he had better take him to the GP which was in the next town. He took Blake there whilst I stayed at home with our younger son. It took 4 hours to be told he had to go to the nearest hospital.
Blake’s Dad took him there and again was told they couldn’t do anything. They referred him to Princess Margaret Hospital (Western Australia). They saw Blake and immediately took him in for a CT scan. What they found was scary – huge amounts of fluid had built up on his brain. A massive Ependymoma Tumour was blocking the ventricles and not letting the fluid flow as it normally would.
That night, he had emergency surgery to put in an external drain. 4 days later he had massive 9.5 hour brain surgery to remove the tumour which had wrapped itself around the brain stem. We were told the surgery was a success, although Blake was left unable to eat, talk or walk which were the side effects from touching the nerves around the brain stem.
6 weeks later, after Blake had recovered fairly well from these ailments and had returned to being a relatively normal 3 year old and 2 days before starting radiation, they did a routine MRI only to find 2cm of tumor that had been hidden during the first surgery. We were devastated. Chemotherapy started 2 days after that to try to shrink the tumour. Blake’s tumor is very slow growing and chemo doesn’t do well with slow growing cancers.
When Blake finished 7 weeks of chemo with little to no side effects (hair loss and 1 vomit in 7 weeks) he had another CT scan which showed there was still tumour left. We have had a further MRI and are currently awaiting the results to see how much the chemo has shrunk the tumour, if any. Blake may need another 2 operations to remove the tumour.
This is the beginning of Blake’story. There is still a lot to come but it hasn’t been written yet.
My Neice had her Ependymoma tumour diagnosed xmas 01 age 6 emergancy surgery removed most then 2 other surgerys removed all 3 yrs ago she had a secondary issue due to radio/scaring and another neuro op she yet again recovered well in may this year scan showed a tumour had regrown 8 years on they refused kemo and 2 weeks ago she had 2 lots of neuro in 5 days to remove it she is 14 and scan was clear this weekend she joined us at a festival and camped for 2 nights. she is truely amazing i strongly recomend a support email group called ependyparents which my dad her grandfather has found very useful on information etc. we thank god everyday for her her surgeon and her remarkable recovery. she is due to go back to school in sept and continue with her GCSEs and will turn 15 at the end of this month.
My thoughts are with you and your family and hope Blakes recovery goes from strength to strengthx
Continue to be strong Francine. Children are remarkably strong. My son was diagnosed with a Grade 3 Ependymoma in Dec’ 09. He had 2 surgeries (which removed most but not all) followed by Proton Beam Therapy. He is exactly one year (today) out of treatment and is doing extremely well. All scan results have been stable. I hope and pray for Blake, you and your family. Much love. x
I just wanted you to know there are over 250 families on an email list that just went changed into a website for support for children diagnosed with ependymoma …. its a great place to connect with other families experiencing the same journey same issues ….
http://www.ependyparents.org
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Fighting the same fight! God’s hands are all over it!
Angelia m/o Nicholas 8months old dx 5-24-2010 Anaplastic Ependymoma
grd 3 Posteria Fossa, (GTR) Complete resection, St Jude Protocol SJYC07
4 rounds of high dose chemo COMPLETED
MRI -STABLE
6 wks of proton radiation in Jacksonville starting on 10-19-2010 COMPLETED
MRI -STABLE
followed by 6 months of oral chemo started 12-09-2010
MRI – STABLE Feb 24, 2011
3 months left of oral chemotherapy – COMPLETE
MRI – STABLE May 25, 2011
FINISHED TREATMENT – NEXT SCAN AUGUST 2011