In one week.
Thursday, July 24, 2008 at 12:06pm | Edit Note | Delete
I enetitled this note "in one week" because i can't believe how much can happen in one week and how life moves so quickly and so slow motion at the same time.
Last Thusday Ashley was transported from BCCH to VGH to have a procedure done . We have recently been told that the major tumor left in Ahleys liver is calcified around the edges(dead) , what would have been great is if when they did surgery they found it calcified throughout the whole tumor...that was not to be. The chemo is having a difficult time getting past the calcification and you cant mass raidate the whole liver and you can't resect that much of the liver so...they will test Ashley at VGH to see if she is a canadiate to have Yttrum 90 where raidation is angio grammed right into each tumor. Risks involved ,oh yeah, tested...she will be the second kid in NOrth America to have this done 1st person ever to have it done for this type of cancer, they have performed it many times on adults for other things successfully. The procedure was to take 1-1 1/2 hours to see if she would be eligible. i rode down in the ambulance with her, jsut as they were putting her out darcy made it just in time to say goodnight to her(traffic and a time change) and i burst into tears thankful , i hate seeing her go under its such a sppoky feeling. we were told when she woke up she would be fine but wouldn't be able to bend her lower half for 5 hours. The procedure took nearly 2 1/2 hours.The clock moved excutiatingly slow, i suppose my way of coping is to wring my hands , pace the floor, stew about things , brace myself for bad news, ask the nuses what they know...completely the opposite of darcys coping sklils which include: reading a magazine, getting a couple minutes of shut eye in, telling me to relax...his coping methods only exacerbated mine. It took me back to those middle of the night breastfeeding days when my kids were babies and he lie there next to me sleeping like a baby, i wanted to kick him then and iwas plotting to kick him now. It was a "go" she would eligible, the dr. came out and outlined the possible risks very candidly., we signed the papers anyways and i hoped my signature was a seal of confidence and faith that would prove to be one of smartest bravest signatures yet.
Ashley woke up and already was not happy because of her chioces on being able to go to the bathroom...we were transported back to BCCH for recovery. Darcy tried to outline her choices for her as gently as he could, this resulted in a kleenex box used as a projectile aimed at her fathers head. We all took this with a grain of salt and laugh about it now. Darcy spent the evening at the hospital with Ashley and i went home to change the Blood(darcys) sweat and tears from my body. Ashley was allowed to go home the next day. Friday., Ahsley is doing well, I talk to darcy by phone and we discuss a plan to try to go camping the next for the first time in our trailer. I make reservations from the hospital , get the kids at home moving on preparations. We say goodbye to the wonderful nurses who have cared for Ashley for the last 2 weeks ( i forgot to mention that yes...ashley was in the hospital for another infection for 2 weeks) We were free. we drove home and started getting ready.
Chapter 2
we were ready to go camping Saturday morning on a glorious LOWEY camping trip to Harrison our favourite place. The packing up i asked the kids to do consisted of their own personal fashion attire, flat irons , beauty products and cell phones allcharged up. Guess which 2 people were up all night gettin ready???we get to Harrison, and christy is not happy we haven't allowed her to bring her entourage of friends with ther on this very first camping trip. So she spouts out commands like "whats there to eat here" what are we going to do " this sucKs" Ahsleys response "this is my trip christy i deserve it !" Darcy eneters the trailer after sweatin his guts out cranking the triler into position and spits out inaudible words through his clenched teeth like"spoiled somethings" and something about grounded forever ?? and something about their "heads together" everyone emerged from the trailer as if the perfect loving familywho enjoy spending quality special time together...except christy who spends the next 2 hours flat ironing her hair and text messaging her friends. we hit the beach and besides a few wet sand throwing contests between them which we just told ourselves "sister fun in the sun. they're creating memories" we had fun.
We put the kids to bed at a resonable time 7:30(just kidding)remember i told you earlier about the best trailer feature having four bunks in the back...weeellll its kinda like caged dog fights. Anyws darcy and i sat down to a much needed glassof wine/beer and shook our sorry heads.
The next day was my birthday...yes 29 ..can you believe it.Not much changed on that day, i get gifts which immedaitely gett borrowed..case in point... ipod from a good friend , i saw it for 15 minutes then catch christy suckin up my batter time , she accuses me of not sharing , this is good for a robust laugh . My family got me beautiful heart necklace and earrings picked out by stefanny. Brittanny had to say goodbye to her best best friend ever that she met at the campsite one over form us. Some friends/ neighbours of ours drove out and visited us that afternoon for a late lunch(also happens to be christys best friend so she was happy...so all was well)My bday ended that evening with a nice late evening dinner prepared by Darcy. It was a perfect day , we were all there living what we had imagined for months. The next day i took the kids to the waterslides met my sister andd her family there (it was my sisters bday day before mine and weve always celebrated our bdays together so this was how we spent it this year, watching our kids play together and squeal in dleight)
Chapter 3
The night after we got home christy and stefanny were picked up by my brother in law to go spend time on the island with my sister and her family for a few days, yesterday we drove Ashley to the hospital to meet up with her horse camp group for kids with cancer , i lioved that she was going to this , she has been anticiapting this day for months and there were times we weren't sure if she would be able to go, but the day was here i couldn't sleep allnight iwas so excited for her and so worried i would over-sleep and be late. We got her in to the camp van with huge hugs and kisses and excitement for the freedom and joy she will experience for four days, darcy and i both were beaming when she left she is probalbly so gald to be away form us , her crazy neurotiuc parents. One left to go and we had to make a big deal about Britaanny going to my Abbotsford sisters as well so we fussed over Brittannys deparute as well ,as if she wereleaving to back pack around Europe for ayear. I got home and "no" we didn't dance around the house or delight in any of the things you might be thinking...we sat in slince for the longest time... i realized that my living room clock has a second hand on it and it is loud. we jsut decompressed and besides running out to the store for a few minute we slept off and on all day , ordered chinese food and barley moved. Darcy left for work early this morning and i am here in this quiet house by myself and am writing this sentence and thankful to you for reading it and thankful to those who made this moment possbble...now what am i going to do????
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...
No comments:
Post a Comment