Layla Grace Foundation

Little feet, big steps.

How It All Started

May9

This is the first post we’ve been able to make and hopefully we can give you the full picture of what is going on with Layla. We are really grateful that Toni Crowder took the time to set up this page and update it. We (Ryan and Shanna, her parents) are so overwhelmed by the outpouring of love, prayer, and support. Please keep praying for Layla and checking back here for updates on her status. We will do our best to post regular updates. We always have our iPhones on us and post several times a day to Layla’s Twitter page. You can follow her status on your phone and receive regular text messages by texting “follow LaylaGrace” to 40404 or by going to http://twitter.com/laylagrace on your computer.

Layla has always been a healthy child, 80th percentile for weight, a great eater, a great sleeper. She is sweet as pie and a little cuddle monkey (she won’t let you put her down!). She has a very advanced vocab for her age which really helps us manage her pain and give her what she needs as her care continues.

Layla had a great 15 month checkup. At around 16 months her sleep habits and appetite started to change and she started to become more irritable. Mid March appetite began to decrease. At the time we thought we were dealing with a “picky eater”. Beginning of May Layla woke up one morning with a swollen eye. We took her to the doctor and she was treated for an ear infection and the doctor said the swelling was just a result of the ear infection. At the same time we noted that her belly was hard and somewhat distended. She had not had a bowel movement for a few days and we were concerned that she was becoming constipated.

The next day we took her to the pediatrician who put her on Mirilax over the weekend and told us to call back Monday. By Monday morning she was not eating at all, still no dirty diaper, her activity level had decreased and was rubbing her belly and lower back and saying “owie”.

Our pediatrician referred us to a GI specialist to see why she was so constipated and wasn’t eating. On Thursday May 7th as we sat in GI specialists office expecting to be told that Layla would need some kind of treatment for constipation we instead hear words like “Cancer” and “Lukemia”. A series of X-rays and tests were ordered and we were sent home to wait on the results.

That evening about five minutes after we walked in the door we got an urgent call from the GI specialist telling us that the test results were in, that things were not good and that we were to bring Layla into the ER immediately and that a team of doctors would be waiting for us.

Layla has a massive cancerous tumor (Neuroblastoma) in her abdomen. It extends from above her left kidney, around her side, over her belly and wraps around her aorta. In addition she has very low bone density and the doctors believe the cancer is inside the bones.

Our sweet Layla went from normal happy and healthy to lethargic, in pain, and skin and bones in a matter of a week and a half.

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Donations to The Layla Grace Foundation are for Neuroblastoma research and other foundation activities to support children and families with Neuroblastoma.

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