Dr.Schultz, Dianne, Dr. Herran,Dr.Whyte, Shaleen and us
Friday, September 19, 2008 at 2:16pm | Edit Note | Delete
ok, so if you'd told me a year ago that watching my firstborn recieve experimental radiation angiogrammed into her liver successfully would make me jump for joy i probably would have told you where to go and how to get there. If you told me a year ago that i would do much of my grocery shopping at Safeway on 28th and Oak in Vancouver i probably would have thought we struck it rich and won the lottery and moved to the shaugneesy area. Well that was a year ago before any of this was even a thought in my head.
Wednesday, the big day the 17th was our 9 month anniversary of the day we were transferred to BCCH the day we met Dr. Kirk Schultz, the man who's words changed our lives forever...one relationship you would want to avoid in your lifetime would be that of one with an oncologist. Don't get me wrong if you do have to deal with this , these dr.'s are some of the best in the world ,however, their brains aren't always programmed for the soft stuff but thats ok if i have to choose i want them all sciience all research and it is one area where they all work and network together all over the world which is how we were able to get this experimental thing done so we are very thanful for all scientists out there ,but just as important( for me anyways )
is the soft stuff, sometimes i can't always hear the raw hard stuff , i need it toned down, lightened up, even if i have to bury my head in the sand .,and that is what the nurses are for, the primary nurses,they are the soft side of their bosses, they help make sense of "too much information" or bring the tender side to everthing, they get to know you personally, they are a distraction in tough times and a ray of hope when youre feeling discouraged.
When i found out our primary nurse would be accompanying us to VGH for the procedure i was able to knock off a few stress hormones from the old petutary gland . One of the motto's most times in these kinds of setting is "hurry up and wait" there was alot of waiting around and prep work to be done prior to procedure, this was a time our primary expertly used to lighten the day , we got to know her on a personal level, found out about her family and life ..which made her so normal ....its like when your kids see their school teacher grocery shopping,they are amazed that their teachers don't live at school!!! same goes. I found myself talking to her about things i haven't told many people. We were also graced by the presence of Dr.Whyte the anaestisiologist...he was a carbon copy of Robin Williiams(patch Adams) his humour both shocked and amused me...as he was leaving to gather supplies for Ashleys "nap" he told us "i'll be right back , im going for a beer can i get you guys anything" as he captured the look upon my face i could hear him giggling down the hall. Our nurse Dianne was invited into the procedure room , so was darcy to "say goodnight" they don't invite me anymore they just grab darcy and go. As Dianne went into the room i begged her to come out and give us updates, she hugged me and promised, i could feel my eyes filling up hoping she would be true to her word, sometimes they can't always stick to that promise for obvious reasons. Darcy returned and we waited in the waiting room..Again he reads the paper and i pace,both of us throwing eachother glances of unbelievability. 15 minutes goes by , Dianne emerges "they're just getting cameras set up" ...15 more minutes..dianne emerges "catheter is in."...the next 15 mins would be crucial...this is where they stopped it last time, when blood flow was poor...we waited 15 minutes may as well have been 15 days, every part of my body was sweaty and dry at the same time (ok too much info) my mind wondered bazaar things like how the female staff at VGH could walk around the cement hospital floors in six inch heels all day, i saw one female medical personnel carting a plastic cooler wearing fancy minnolo's im sure, i thought to myself "if i was a patient waiting for whatever organ lie in that cooler i would be hoping the transfer staff would be wearing comfortable, fast ,practical nike running shoes," however, maybe it was just her lunch or a half sac a beer in there. I had been paying special attention to shoes lately, thanks to another oncology mom, who blogged about what it would be like in other people's shoes..now i find my self staring at everones shoes(thanks Jen). Anyways the procedure doors kept opening and closing , i jumped every time, regardless of darcy's strange presence of calm...finally, she emerged ..two thumbs up!!!! i bawled like a big baby, she gave us quick details and then left. Darcy:" see i told you everything was going to be ok" at that point two little words crept into my head and quickly faded in place of joy..pure joy..pure contentness and the cancer isn't even finished yet.
The next person to emerge from the room was Dr.Herran, the man that performed this brainiac thing, the one who gave me that reassuring hug last month "my encounter" he tells us "everything went well" i told him i was going to hug him and i did unreservedly (wierd for a reformed non-hugger) he tells me this time..."i just got a chill" maybe this was his encounter? After the particulars ,as he walked away, i yelled out"i Love you" as i would to an old married husband...speaking of which i thought "did i just say that in front of darcy" i looked for a reaction from darcy wondering if he was concerned, after all i don't think i had said "i love you" to his smugness(calm darcy) today, before i could say anything he yelled out "me too", i think that was the best part , the instant connection , the raw human emotion that emmitts neurons from your heart and the place of gratitude within. We spent the rest of the time in recovery , diane assisting ashley out of anasthetic while ashley glares at us (she doesn't like coming out of it too much , i swear she thinks we are the ones doing this to her) anyways we continued to chat and rejoice with the recovery nurse shaleen who afforded us all the possible comforts in this adult non-child hospital, The day was done except for diannes husband who was waiting to pick her up at childrens hospital for 3 hours as we waited for the transfer ambulance to pick us up. I felt so bad for him even though i had only gotten to know him through our conversations of the day. Phonecalls and emails were sent to everyone to celebrate, yet warn caution, as there is still one more step in this procedure and several more i am sure in the journey .It was my night to drive home and as i did i listened loudly to the perfectly timed song"pocket full of sunshine" which was a nice change from the usual "had a bad day " tune. It was a 10 hour day but a very good day..one that i never would have imagined a year ago.
Ashley is recovering well, radioactive, but feeling good.
From the hospital cot at bc childrens hospital thank you God and thank you everyone for sharing the joy in this partof the journey.
Peace
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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