Friday, May 08, 2009

Update on Layla Grace

I AM EXHAUSTED...so this update is coming from the one I posted on our playgroup message boards. there are spelling and grammatical errors but that's all i got for now...

i am home and so emotionally and physically drained i can barely think straight so i hope this post makes sense. after 4 hours of sleep last night and one meal today i am ready to crawl into bed. if i am feeling this drained i can't even imagine what shanna and ryan are feeling inside.

kelly and i went to the hospital today to vist. we got there around 3:15 and left at 7:00. i have never been to the oncology floor of a hospital and never at a children's hospital. i think a special prayer needs to be said for those docs/RN's tonight. they are truly incredible people. it's a hard walk down those halls.

now on to sweet layla...

i would be lying if i said seeing her eased my mind at all. when we got there layla looked very worn out. she was still coming out of a sedation from an earlier scan and was very out of it. it was extremely obvious that she's in severe pain. she counldn't sit still bc of the constant pain in her back, stomach, legs, etc. the doc described her bones and feeling like they are full of arthritis and are very painful. because of this she won't eat either. she hasn't eaten in two weeks. up until this evening a piece of toast and a few slices of banana have been a lot. she literally cried and pushed everything away as they begged her to just take a bite.

more blood was drawn and we bit back tears as layla cried and screamed not wanting to be touched. needless to say, kelly, shanna, and i went walking at this point. after talking to the pedi some more, they decided to try some morphine. y'all i can't even begin to explain the change layla made within 5 minutes of having that morphine. 180 doesn't begin to describe. she went from lethargic and miserable to smile, laughing, singing, making animal sounds, and EATING. she ate an entire helping of mashed potatos and drank a fully sippy cup of juice. this is HUGE. HUUUUGGGGEEEEE!!! for a couple of hours layla was the happiest she has been in 2 weeks. it was a much needed site and thankfully kelly and i were able to talk about it all on the way home as oppose to crying. we did okay while we were there, shanna only had to tell us once to stop the crying. it was hard.

now on to the more crucial update. the extensive ct scan today revealed that the tumor is not what they had first hoped. it was originally though to be above her kidney on her left side. well, that is only the start of it. it wraps all the way arouond the front of her stomach, around her aorta, and around another vessel/ventricle. it's really big and really aggressive. this was devestating news to ryan and shanna. originally they assumed surgery would be done to remove the tumor, but now because of the size and how wrapped around her heart it is, they will have to biopsy it (along with her bone) to determine the type of tumor. from there they will hopefully go straight to chemo. our prayer is the chemo will kill the tumor and in turn, the bones will heal themselves. the bones could be one of two things...side effects of all the hormones/toxins released by the tumor or bone cancer. we are praying that killing/shrinking the tumor will take care of the bones as well. if the tumor does not go away completely, as long as they can shrink it enough to do surgery safely, that is fine too. they are still going to do a brain scan soon to rule out any brain tumors but right now, the cancerous tumor in her stomach is the number one concern. the tumor is very aggressive and they are monitoring it closely, taking measurements daily for any changes. the doc said this tumor could have been there for a year or could have grown in the last 2 weeks when the symtpons started. we are just praying the chemo can kick it's butt!!!

immediate prayers requests...

- layla to remain pain-free or for her pain to be tolerable
- that she continues to EAT!! they won't want to start chemo until she is fattened back up.
- that monday's biopsy goes smoothly and that we get good results...treatable tumor, no change in size, etc.
- that Ryan and Shanna get some rests are able to take care of themselves.
- JENNA and CLAIRE. Jenna is VERY upset, she was crying at school today. She is 8 and worried sick about everything.

PRAY! PRAY!! PRAY!! PRAY!! PRAY!!

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6 comments:

Felicia said...

Oh, Steph my heart is breaking. I cannot imagine having to go through this with any of my babies. We are praying every night for their sweet baby girl.

Chris & AnnMarie said...

I am praying hard for the Marsh family!

Lil Bit said...

Oh Steph, pleasee keep us updated!! Let Shanna know we are praying for Layla and their whole family non stop. That there are people all over that are praying!! Thank you for keeping us posted on what is going on...

Please God be with this family and her big sisters. Hold them tight and make them know You are there! Please....

Julie said...

Stephanie - Thank you for the update, that is terrible news and so sad to hear.... I will be praying for Layla and her family. Miracles do happen and that is what we are praying for.

Pleasekeep us updated.

Julie

WendiNC said...

You do not know me and maybe you've heard stories from other people of their own issues but I want to tell you one more story that is of HOPE and GOD'S MERCY. Her name is Kim Sisk. She had just given birth to a little boy and noticed a lump in her belly that didn't go away when the baby came. Doctors told her it was probably no big deal. A year later she went to the doctor because it was just too much of an issue. Doctors diagnosed a type of lymphoma. Her's too was wrapped around aorta and her abdomen area and was in operable. She went to doctor's in Duke, then Texas (we are in NC) and Texas doctors gave her treatment to be done here at home. SHE IS NOW CANCER FREE! God has healed her. Know that although little Layla Grace is on the hard side of the treatment now, it can get better. I promise to keep this family and sweet girl in my prayers.

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