Monday, September 14, 2009

WARRIOR - ALI EL SAYED, CANADA

Team ALI
Gorgeous Ali

Ali's Mom Rhenda actually "found us " through the world of blog and has been a huge support for Deqlan and our family.


Rhenda is mom to some beautiful children, her youngest Ali was diagnosed with stage 4s neuroblastoma at stage 8 weeks of age. The difference between stage 4 and stage 4s neuroblastoma is that in stage 4s the cancer has not spread to the bone, and it is when an infant is diagnosed under the age of 18 months.


Here is Ali's story


our journey begins with the birth of our fourth child, a beautiful baby boy born june 17/2007 on father's day and what a day it was! everything was going great until in the begining of august I started to notice ali was not right he always seemed bloated and when i'd pick him up he make a sound as if he was carrying a load on his back, so on august 9/07 we took him in to the emergency room to see what was going on, the pediatric doctor said is tummy was very distended so we had a x-ray done and it showed that his liver was enlarged , he advised us to rush him to the stollery children's hospital and have an ultra sound done, so thats what we did and I will never forget those words "your son has a large mass on his adranal gland""an oncologist will be here to speak to you" and all I kept thinking was ..what,who? oh my God what is happening to my baby he is only 7 weeks old...and so the journey began....tests ,scans,pokes,and more scans....the CT scan showed not only was there a tumor on his adrenal glad but the cancer had spead to the liver and bone marrow as well,on the day of the biopsy the surgeon Dr.Gordon Lees came in and told us he won't be able to remove the tumor on the adranal gland so ali would need chemo first....and at that moment my life just went to a full stop along with my heart....I couldn't believe what I was hearing, here I am sitting with my husband in the waiting room with my baby in my arms waiting for them to take him at any minute and all I kept saying to myself I need a miracle now....please God I need a miracle, the surgery was over and the doctor came with the big news...my miracle came true.. he was able to take the whole tumor out! after a long wait the results were in,Ali was diagnosed with neuroblastoma stage 4s, so the doctors decided not to start chemo and just keep him on close watchful waiting to see if the tumors in the liver and bone marrow will regress on their own..and so thats what we are doing now ,Ali is having a CT,MIBG and bone marrow biopsy done every three months... which is so hard because you never know what to expect.....


Ali has just recieved results of his latest round of tests :

hello all,

I recieved a call from the stollery yesterday with some good news, ali's scans are stable, the MIBG showed no change from the last one so I guess the nodes are in fact just regenertaing liver growths and the tumors are still the same so no better no worse...Thank God! so the doctors have requested a CT on September 17 for his chest an abdomen..if that scan shows no change i'm hoping they can stretch his scans to every six months,I will update with the results when I get them on the 23rd of September,I still can't wait for the day they tell me he is NED....I will stay positive stay praying,I guess there is not much anyone can do except pray and hope.Ali is growing so fast,he is learing a new word everyday...he's just like a little parrot.Right now he is into dinasaurs,he loves watching 'the land before time'and he imagines everything in the house is a dinasaur its pretty funny.He is also very,very active...loves to jump on the trampoline and is not afraid of trying new things he's a little adventurer. I would like to personally thank everyone who said a little prayer for ali...God bless you always!thanks for dropping by.....love rhenda


Rhenda, we cant wait for that day either and will scream NED at the top of our lungs with you!! Continue being such a great Mom to your beautiful boy. Prayers continue for you and for Ali's healing each day!


Friends, go and pop into Ali's site and leave some words of encouragement



God Bless, and love and prayers!

3 comments:

rhenda Elsayed said...

Love the train!Deqlan must be so excited to ride in it,Thank you so much Samm for the entry,I hope it helps another family going through a similar situation.I can't believe two years already passed since his diagnosis,it felt much longer.Keep up the great work...my family and I appreciate all the words of encouragement that you give us,you are such a wonderful person...God bless you all

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