news from us this week
Tuesday, November 4, 2008 at 1:24pm | Edit Note | Delete
I have tried sitting down to write a new note several times in the last week and just haven't beena able to muster it up. This note will not prove to be creative or witty however i hope it comes out with a positive message, my words have been chosen carefully even if it looks like im angry and pissed off , it has been a long time coming, so bear with me.
Last Monday evening our dr.phoned us at home, of course my first question was Do you have results from the PET scan? The next words out of his mouth sent me back to Dec.16 2007 , the same blindside the same kick in the gut, only worse because the 1st time I only understood cancer form a very naive point of view and now i was facing it with too much knowledge about what this friggin disease has the power to do.
I had a feeling that maybe we might be facing some progression in some areas but apparently it is worse then "a bit " of progression, it has moved to her back ( ican't say the word spine) lungs and the other side of her liver(the side that wasn't radiated). so what does that mean??? well apparently the pain we thought was tumor dying was actually tumor growing...what a sick cruel joke.
The next night we were called into one of those lovely parent meetings , you know the ones , the ones where i cant seem to look at the dr. in the face because of the range of emotion i am experiencing towards him at this momnet, we were also joined by a pain management dr, wow where was she for the last 6 weeks.. The meeting ...3 hours , i will spare you the details, i will spare you the words i uttered over and over again, but i can assure you whatever you are feeling right now is magnified by numbers that i cannot calculate right now. Darcy as well ,full of questions and unbelivability, but ,as we left feeling emotionally raped we were greeted by a good friend a bottle of wine in the hospital lobby*(discretly of course...like i care... was actually hoping someone would say something, no one dared) We arrived home at 11:30 that night , we stopped to get Christy a box of Halloween candy at the new 24 hour Shoppers Drug mart(nice store) she called to tell me was "a must" for school the next day. My sister asleep with the girls mustered her way back home and we lie there for several more hours on the couch watching tv aimlessly trying to sort through information overload. We have been home alot hanging out together, watching movies, hanging out with teh kids cousins.
The plan...well.... previous chemo is not working, the old plan is now scrapped like old garbage, Ashley will try a new experimanetal drug(chemo) to see what it will do and to keep from spreading, , she has great
pain meds now and radiation all this week for her back(spine).Her radiation is here in this great new hospital in Abbotsford, which we are so grateful for. What the outcome will be is not for us to say only to pray for.How is Ashley ...mad and sad as hell becuase that is what she is going through... pure f'n hell, Of ocurse they set up psychology appouintments the next day so they ccould over state the obvious and offer suggestions that seem generic. Ashley has decided to output that energy creatively , she is painting a beautiful mural on her bedroom walls, a forest scene , with deer and animals and trees and clarity because if you know Ashley then you know her appreciation and love for these things,it will be her serenity place her escape, we are so prould of her , she just turns it around everytime.
If you are asking "why " questions about the medical care etc, or what else dr's could have done...its complicated and not questions i haven't asked a million times ,however , cancer has a mind of its own. Am i mad ...yes, at things that might seem wierd, watching my daughter not being able to go to a school dance , watching her friends go on with their lives, uncompassion, pettiness,God, self absobtion, this whole last year, family members,christmas, rudeness, ungratefulllness,tv, . I have much to be gratful for though too , some really great peole in our lives, hope,God, good advice , silence, compassion, understanding.... and mostly our family, we have drawn closer yet again and are so grateful for our beautiful children.
I am sorry if ive sounded pissy...actually know im not, this is the reality, this is what it does to you, in some ways, it has made us fight even harder which is what were up against now , a tougher , harder fight, how im not sure yet we are looking at naturopath stuff and whatever else i can get my hands on, feel fre to solicit reasonable advice. we are pulling it together, some days bad and other days not quite as bad, but we live this moment and this moment only when possible.This is our FAMILY facebook and look forward to positive feedback. My personal email address is loweys@shaw.ca. Thank you for you patience ,understanding and support.
Peace(create it)
Lori
The Journey of a butterfly...Ashleys life has become symbolic of a butterfly, peaceful beautiful and free to fly where the wind takes her. We have a white butterfly that flies around us in the garden in the springtime where the other girls play. Irish folklore tells us that a white butterfly is the rebirth of a deceased child's soul reborn into something even more beautiful than before...our butterfly
June 29 1992 - February 16 2009
Welcome to the Journey of a Butterfly
We invite you to follow along one family's journey through grief and loss, one brave young girl's journey through faith and inspiration, this is not a blog to convert anyone , nor is it a blog about fundraising , it is what i hope will reach another family on a similar journey, we are not experts , i could not give you a magic remedy for how one gets through disease and devestation but it is our story , sometimes gut wrenching other time heartwarming and all of the time, i guarantee, very real. We are not perfect, we struggle daily and i think that the more we connect to one another the more we understand what this journey through life is all about . Sometimes that path is bumpy and we fall down, sometimes we sit and stop a while,or take a step back and other times we pound our fists on the pavement like a lunatic , still other times we find ourselves picking eachother up dusting eachother off and walking alongside them even if only for short time. This blog is dedicated to Ashley , her sisters and every single angel that picked us up along this road.
This is an introduction to the beginning and middle part of our journey the specific blogs are more indepth , the end...well there will never be an end to this journey i've come to realize that , not on this earth, for now we just assimilate it into our life like a hole , a missing limb, a continous ache that you just learn to live with.
When Ashley was about 12 years old she asked if she could go to youth group at a local church , i didn't have any church upbringing but know i craved it throughout my life , this was a rare opportunity and i recognized that if i didn't embrace it now she may lose her interst in it very quickly and beocme a jaded, cynical, stubborn person like her mom. My husband grew up in a very religious (shove it down your throat) kinda religion( i wont mention any names)or maybe it was the way he was raised ? Anyways i encouraged her to go because the community we had moved to embraced this kinda thing so i thought why not? Naturally and shortly after she started attending she was soon encouraging us to go , she had made quite a leadership name for herself there , pionner leader , sunday school helper etc, i was comfortable for the first time in my life going to a church, maybe it was the first word that greeted you as you walked in..."belong" maybe it was because they embraced community and outreach service in our city , dont know, but soon found it very therapeutic, cheaper than a shrink, and our other 3 girls jumped on board pretty quickly, my husband well... a work in progress , he communes with God in a fishing boat he says , although makes many efforts to go even if just for good way to start the week, i was still cynical , felt i wasnt holy enough but went anyways.
Ashley was scheduled to sing a solo in the church choir Dec 16 2007 , i was scared for her, i was sure she got her singing skills from me which was nil at best. She sang beautifully and you couldnt tell she had been complaining of cramps , something i chalked up to girls stuff/growing pains for a couple weeks off and on, she was an active healthy girl. When the performnce was done we got our christmas tree and i took her to the clinic to have it checked out before Christmas , they sent us to our local hosptial for tests , i was worried it was appendix. Darcy, my husband left the hosptial to go pick up our other 3 girls from friends houses , i caught the doctor in the ahallways and asked if the ulstrasound pictures were back, i remember having eye contact with Ashley only feet away from me but far enough away for her not to hear the doctor to so impassionaltely say "its not appendix, it looks like cancer", i have to stop as i write this because it is still one of the 2 biggest shocks in my entire life, i think i ran down the hallways screaming with no sound coming from my throat and not knowing where i was running . I phoned Darcy and words didnt come out of my mouth. Before I knew it we were at out local Childrens Hospital(100km away) meeting oncologiosts , being give an "oncology team" which consisted of a primary nurse, a social worker, a main oncologist and a shrink....wait a minute ...what is an oncologist? yep, a cancer doctor, this was the real thing . we waited 4 days to find out what type we were dealing with ... it was curable 90 % even though she was stage 4 , how the hell can my kid have stage 4 cancer and only a few cramps , it was mind bending. We were thrown stright into a world so foriegn to us , everything stopped ..jobs ..PAC meetings ,carppoling and yes even some friends who"couldn't handle it" it was no longer our own beds , our own home, our own anything. Treatments and life became unbearable , the 90% cure rate was not looking good at any stage throughout our journey , it seemd to be always full of negative news to the point where i couldnt stand the face of her oncologist , it nearly made me want to vomit everytime i saw him...The words they briefed us on as we began this mind altering path was " one of you will grieve through this process and no matter the out come the other will grieve after " they couldn't have been more right.......Ashley insisted on going to church on Christmas eve, two nights before she was to start chemo at the end of the service our pastor came to pray with us , i didn't know many people in the church , but wow did they know Ashley, when we rose our heads from bowing in prayer the whole congregation was surrounding us , i knew at that moment who i was going to need to get me through this ...would he be willing to listen to me...
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