Honorary Engineers

Our hearts are filled with gratitude for the way the Lord has blessed us. We are continuously amazed at the love and support we have received from people around the world and we know that your prayers have made a difference.

We are also very humbled that Jackson's website has enabled us to share our personal testimony and has been a source of information and hope for others. We would like to share our website with some of the families we have met along the way, asking that you wrap your heart around them and lift them up in prayer as you have us.

We have set up this page to keep you posted on Jackson's friends whom we have met through this site. Most have websites but Ben doesn't so we wanted to keep you updated here.

We first met Ben when his mum posted in Jackson's guest book in April 2008. Ben lives in England with his parents, Neil and Nicky.

Ben, as you can see, is a very happy little boy, in spite of all he has been through!

We asked Nicky to share with us a little about him and what he has been through in his young life.

"Ben was diagnosed with a Choroid Plexus Carcinoma when he was 20 months old (March 2007), he had surgery to remove it, where they managed to resect 95% of it, which was the size of a grapefruit!! They left the size of a plum in there, as it was too close to his brain stem & he had already lost lots of blood (32 pints!), he had 6 months of intense chemotherapy, which shrunk the tumour & left no signs of it on the MRI, but his routine scan 3 months later shown it had returned (December 2007), he had another operation which removed all of the tumour followed by 3 weeks of oral chemotherapy & 6 weeks of cranio-spinal radiotherapy (radiotherapy to the whole of his brain & spine). He became frail, but fought his way through it like he did with the chemotherapy, always so happy, and smiling! He remained stable for 10 months, but his routine scan this month (January 2009), shown he has 2 small tumours very close to each other. He is having another operation this week (29th January), but do not know if the UK will give him any other treatment, so we are contemplating & researching into coming to the USA!

Our little boy is such a fighter, although he has special needs, & cannot speak much, he always gets his point across, and very rarely gets frustrated or cross. We carry on praying & believing that there maybe some treatment that can help him. He is our world! We would appreciate your prayers too."

Contact Neil and Nicky

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Other Honorary Engineers

Ben

04/21/10 Update from Nicky

Ben's oncology consultant got in contact with Dr Wolff in Houston & between them have come up with 2 chemo drugs that Ben is having. He has had 3 cycles so far with the 4th starting tomorrow. It is supposed to be given everyday for 5 days on a 21 day cycle, but this last round has been 5 weeks due to his platelets not rebuilding very well! He did have a mri after 2 cycles which shown an improvement, so Ben is having another 2 (including one starting tomorrow) then another scan. Ben has been very well in himself the past few weeks, but during & for a week after he has the usual chemo side affects!!!

02/2/10 Update from Nicky

Ben had chemo (not harsh) last year Mar-Sept'09, which kept the tumour away, but unfortunately he relapsed once again in Jan this year! It seems those last few cells just won't go away!! It hasn't come back were he had his operation, but there are 3 small bits at the back of his left side (same side as before) & 2 on his spine!! The oncologists said they didn't know what else to do except prolong his life, but we keep fighting/ researching. His doctor got in contact with Dr Wolff in Houston who specializes in this tumour & he came back with a few chemo ideas which Ben started Saturday just gone.

Ben has developed soo much this past year & we're willing to fight this horrible disease. Thank you for your continued prayers, I often look at Jackson's website & glad to see he is doing well. Nicky

06/24/09 Update from Nicky

We had a scare with Bens MRI 6 weeks ago (first one since starting his chemo), but Neurologist are sure it is post operative scarring (there was an area that oncologists were unsure if it was tumour!). He had another MRI last week when they have confirmed no change! We get a lot of comfort from praying, & totally put our trust in God he is great. Ben will continue to have more chemo starting this week.

04/10/09 Update from Nicky

Ben has had 2 cycles of chemo so far, one of the drugs had to be changed for round 2 due to his kidneys being affected by it (the doctors are keeping a close eye on them), apart from the usual side effect of chemo- tiredness, not eating much etc, Ben has not been too bad!! (We carry on praying it's the side effects of chemo). He has one more cycle left, then a MRI scan on 6th May, with which Ben will be reviewed: if it's clear then more chemo will be given, if not then it's back to square one, which we are aware, without a gross total resection chances are not very good! (Ben did have this resection in January.) We would be very grateful for your continuing prayers that Ben's MRI results will be positive. Along with Jackson's prayers, they are a great comfort to us. Thank you. Nicky

02/13/09 Update from Nicky

We got home today, the neurosurgeon is very pleased with the operation, & is going to have further chemo, starting in the next week.

Ben had a 9 hour operation on 29th January, which was very successful & the Neuro surgeon is pleased with his work. He managed to remove all of the tumour, and much of the surrounding tissue. Due to the deepness of the tumour, Ben was left (hopefully) temporarily paralyzed down his left side. We have spent 15 days in hospital, & he is very slowly gaining control of his leg, but nothing yet in the arm.

He begins Chemotherapy in the next week, which the Oncologist has mixed up drugs to try. This should last about 10 weeks. He carries on having intense Physiotherapy alongside his Chemotherapy. We still carry on praying this will be a cure for this tumour.

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