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!!