On may 7th we found out that Ellie (Four months old) had a brain tumor that was 1/3 the size of ...her brain, She underwent a seven hour surgery to remove the tumor. It took her two days to come off of the ventilator, and when she finally could breathe on her own, we found out that she had an infection and was put on antibiotics for seven days. On the 14th of May she was taken into another four hour surgery to place a VP shunt into her brain to release the fluid that was building on her brain. After this surgery, she wasn't breathing on her own, and the doctors didn't know that she ever would, but after a day she was proving the doctors wrong again! Then on May 17th, we received a call from her oncologist. As most of you know, they did a biopsy on her tumor which determined that her tumor was cancerous and a very rare cancer at that, called ATR, it's so rare that they wanted to send it to cancer care alliance to have it studied. This diagnoses was devastating because the survival rate was very low, about 50/50. Well yesterday our lives changed yet again, Dr. Thomas began to tell me that the cancer care alliance did a lot more stains, ones they don't normally do, and the stains came back as abnormal for ATR. It was something they have never seen before, so they sent the results to Texas to be looked at, and it was there that they finally knew what it was. Ellie DOES NOT HAVE ATR, she has DIG also known as Infantile Desmoplastic ganglioglioma, This type of cancer is even more rare than ATR, in fact there are less than 60 cases ever!! He then went on to tell me, that yes it is cancerous. Yes she will eventually need chemotherapy, and possibly radiation, but at this moment she MAY NOT need chemotherapy, and that we MAY have time for her to get older, so that she can better handle the chemo. This is a LOW GRADE tumor, which means that the chemo will not be as severe. Now because there are so little cases of this type of cancer, our doctor had never heard about it, and needed to call an expert to ask about it, because he doesn't have any answers for us at the moment! You also see that I say MAY, a lot, because right now, not is definite. We went from maybe having six months with our baby girl, to MAYBE having 14 years, this alone is a blessing to us! Yes we MAY have to live a "WHAT IF" life, but we will take the "WHAT IF" if that means more time with our little fighter, who is now MORE THAN ONE IN A MILLION! As of July 6th, 2013 Ellie has two teeth, and is acting like a normal baby. She cannot sit up on her own, like the doctors thought she will need physical therapy to help strengthen her back muscles, and she more than likely won't walk by the time she is two. although by the grace of god our little six month old is rolling over! Something that the doctors said she wouldn't be able to do!! She goes in for another MRI in August 2013 to see if her tumor is growing, also to check two more lumps.
On May 14th, doctors had to perform a second procedure to remove fluid off of her brain. Barring any setbacks, Ellie is scheduled to undergo a spinal tap next week to see if the cancer has spread to her stem cells, and if it hasnt, it will slightly increase her odds.
In early August 2013, doctors discovered that the tumor had returned. On friday August 23rd, Ellie went through another five hour surgery to remove the regrown tumor, this surgery was very scary as it was very close to the brain stem and two vital blood vessels, but she came out of it and is recovering perfectly!
Ellie went in for another MRI on September 13th, we found out that again the tumor was growning. This is when we had decieded other options, Ellie started chemotherapy on October 4th, after she had a port put in. Her latest MRI that was done on November 15th 2013 this MRI showed that finally her TUMOR IS SHRINKING!!!
The Walton family and friends are attempting to put together as many car washes, spaghetti feeds, bake sales, and yard sales as we can come up with as a way to help. We'll keep you posted here as events come together.
can do to help would mean so much to this family; it could never be put into words.
Please contact us if you have any fundraising ideas or if you can make a different type of donation. You can also send checks or money orders to KBR credit union (803 Portland Ave. Tacoma WA 98421) with kyle and sarah walton as the payee
Again thank you all so much!
Volume 12 is hosting a football game in honor of Ellie, on November 23. For more information you can go to https://www.facebook.com/events/615590898499479/?ref_dashboard_filter=upcoming