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Eleanor- an inspiration to us all, for everything she
has endured within the past few months of her life.
Eleanor is the daughter of AnnMarie Wheeler and Justin Dore and
the little sister to Ruby. Eleanor is a happy, courageous and
according to her mother, often a "rascally" little baby
girl. On April 11th, their journey began.
Their
Journey: (Through the eyes of AnnMarie Wheeler- aka Mommy)
April 24th
We came to CHEO on April 11th 2014 for what we
thought was a regular ultrasound that was going to tell us that
Eleanor had a little bit too much gas and we would have to wait it
out.
We found out quite quickly that her belly was not full of
gas but a huge tumor which has since been diagnosed as
a mesenchymal hamartoma, which is a rare benign
tumor. This one has infiltrated E's liver also.
May 10th,
So we finally got word from CHEO this afternoon. They got word from the pathologists in Texas and they need to do another biopsy... They weren't able to tell for sure that the solid mass in the giant tumor wasn't actually cancerous so we are headed to CHEO again Monday morning so Epic E can have the surgical biopsy done! Not the news we were expecting! But again, we know they are doing the best they can!! Dr. Nasr will be performing the biopsy this time along with a radiologist to hopefully ensure they get a good sample and a big enough piece so they won't need to do this again!!
May16th (Resection Day)
Hey everyone... just a quick update to let you all know that Epic E went in at 8am this morning.. It took them awhile to get all her lines in so surgery only started at about 10am..The nurse said everything is going well so far though!!!
So she's out!!! We haven't seen her yet but Dr Nasr came out to tell us he feels things went well! He was able to get about 85% of the tumor! She needed about 600ccs of blood but is tolerating that transfusion well!!
Epic E's belly... the incision was about 6.5-7 inches long.
~Finally able to go home, roughly a week after major
surgery!~
It's so interesting that in only three weeks we have forgotten how scary things were for a while. We're even already at the point where we forget about her scars!! Like at the splash pad - when we went to change her out of her swimsuit there was a moment of, "Whoa, that really all did happen!!" when we saw the scar again!! It's a bittersweet memory for sure, one filled with the horror of watching our baby girl have to go through what she went through and then one filled with appreciation and gratitude at the way everyone came together to support us in this very overwhelming time in our lives!!!!
June 18th, (One month after Resection)
She had an ultrasound done this morning that is seeming to show a 13cm mass which is outrageous! Dr Nasr came to see us and told us he couldn't believe that, and doesn't believe it so she is going for a CT scan tomorrow to determine what exactly is going on!
June 20th,
Finally at about 130pm, Dr. Nasr came in to talk to me... Unfortunately it is not the news we were hoping for. The tumor has grown again and is growing at an alarmingly fast rate. He told me that not only has he not experienced this before, but he has never heard of this happening before. They looked into the possibility of an incorrect diagnosis, but they checked the large mass (20cms) that was already removed and there was still no cancerous cells in it. At this point, the mass is already measuring 13cms..
Dr. Nasr has consulted some of his former colleagues at Sick Kids in Toronto and there is the potential we may need to head there to have another surgery to remove the entire mass. Time will tell what the next steps will be!!
June 25th
We're in the emergency department right now. She has been for a chest xray which showed her right lung has only about 30% capacity and she had an ultrasound which is showing that2/3rds of her right lung is collapsed so they will need to put a drain in to try to help with her breathing (it was Dr Nasr who told us this and he will probably be doing the incision to put the drain in)
We got a call from Dr Nasr today and he would like us to go to Toronto for a second opinion because no one really has ever seen a benign tumor grow this rapidly.
Just got word that they're willing to take her in right now to do the drain. Dr Nasr informed us that this is bad... now we just wait again and hope for the best!!
“We want to thank everyone so so much for your continued love and support. Many people keep asking, "How can you stay so strong through all of this?!" and honestly, it's partly because of the support everyone is showing to our family in this time of need!! Also, we can either be positive about this and get through it while still taking the time to notice the happy moments in life or we can let it consume us and make us miserable... the latter is less than desirable so to us it's an easy decision... There are definitely tough moments but the enormous amount of love, support, thoughts, positive vibes and prayers for Epic E and our family has made this journey a little less daunting to get through!!!”- AnnMarie Wheeler
The family is leaving July 16th for a consult at Sick Kids Toronto and hopefully Epic E will be able to have surgery July 18th to remove the whole mass. Throughout the past few months I can see that everyone has been so wonderful. Helping out in every way possible with visits, gifts/cards, through their words and a simple prayer. Let us continue to support Epic E and Family through their continued journey, DONATE TODAY and make their life just a little bit easier, as all their strength needs to be with Epic E.
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