Life Lately with The LoweysShare
Wednesday, April 16, 2008 at 10:02am | Edit Note | Delete
Hello Family and Friends,
Well I thought maybe we'd join the 21st century and and bring our world closer to yours and try our best to keep everyone informed on the latest information on our everchanging journey.
On Dec.16 a typical Christmas rush kinda day, getting our Christmas tree etc. we took Ashley into clinic to have a pain in her side checked which we had chalked up to "growing pains" for a couple of days. Thanks to a dilligent Dr at the clinic we were told to go to MSA. Ashley was fearful of going because she didn't want to get a needle.(how surreal that moment has become) Within a couple of hours we were blindsided with the probability that Ashley likely had cancer. If you have ever felt the stability under your feet completely removed , a feeling of nothing holding your body up, and a primitive sound within your soul emitting from some part of your body then perhaps you can relate. We were taken to Childrens Hospital the next day by ambulance, a reference of time i do not recall. We were introduced to the main oncologists and the medical team within hours(previously i had not known the meaning of oncolgy)I remember asking "how long do you think we'll be here?" clinging to the hope that it was just a mistake or mix up. We had to wait four days to find out whether she had a cureable type cancer...or not. Our memory of that time was in flashcard mode. "Surgery" "Oncology" "Chemotherapy" "transfusion".We were wisked into several parts of the hospital for various procedures and "parent meetings" at 5:00 daily where the news was always a mix of shock, little comfort and faint hope. Ashley was diagnosed Dec. 20 with germ cell tumor(rare cancer, less 3%)...mostly curable but requiring aggressive chemo, because it was stage 4. Her AFP which is the tumor marker read 42,000 a normal body 's AFP is 11. Ashley took the news with strength and grace and a fight just as our other amazing kids Christy Stefanny and Brittanny did. Darcy was strong and looked at the doctors when i couldn't bear their medical looking faces. Ashley was allowed to go home for a couple of days for Christmas which was bittersweet and not celebrated with the same traditon or importance on the trivial. I knew at this time that nothing would be the same ,our time, our thoughts ,our actions, our perspective had changed in a milli-second.Telling our family and friends was difficult ,rightly so, they had questions which we just couldn't answer.Childhood cancer is random and not lifestyle realted there was no rhyme or reason.we wondered how? why? when?too.
We began to get an outpouring of love support and prayers once the news was out. My sister became our task master and family spokesman. Others came forward with gifts and food( freezers fulll of yummy food) and and cards and fundraising, prayer emails and chains, gift cards , gas cards, coffee cards,great support from our employers, technical support.laptop,wine and hospital visits, comfort , penny drives, penny rolling.beautiful blankets,and thoughtful necklaces and pins,books and quotes, hugs, errand running, transporting our children, offering support and outtings to Christy stefanny and BRittanny. Ashley was back in the hospital beginning chemo Dec.27 i left my job, darcy modified his work schedule (thanks to his generous employers)so that we could take turns being with Ashley and our other patient helpful children.A new normal was arising, Chemo hit Ashley like a tsunami and my new definition for helpless is watching your child violently ill and realizing that the normal measures of comfort we usually offer our children are rendered completly useless.New Years was spent with Darcy and Ashley celebrating together in the hospital and the rest of us celebrating Christy's new years eve13th bday with a party to maintain some normalacy. We have gone through 5 rounds of chemo and two uexpected long hospital stays(including Easter) due to serious infection. We were hoping Ashley would be eligble for surgery but she is not which requires more and different chemo as the last chemo was begining to seriously effect her hearing.
We are perparing now for a bone marrow transplant(her own cells) and an unknown amount of more chemo.Her AFP is now at 760. Yes our life has changed dramatically in many ways, we had to say goodbye to our dog Charlie, (we just couldn't spend the time we needed with him , so again Darcy's employers stepped up and brought Charlie into their disneyland for dogs.)we have made the hospital our second home,Ashley is tutored at home and at the hospital and voice conferences one of her classes. We have had to rely on many people which i am truly truly grateful for, we have seen the kindness of strangers, one little boy we have never met(Austin) raised 180.00 in his school for Ashley to get a wig. We have witnessed the amazing expertice of the medical team at Childrens as well as the patience and compassion of the nurses, they just know exactly how to be with parents and children even when parents are not "coping well". There is a special place in heaven for these people. We have been blessed with the previously mentioned and look around and see that there is always someone who has it tougher than us, there are families who have had to camp out becuase they live too far to drive being separated from one another, we are lucky to have such a great medical plan i have seen others spending hundreds on the same medicine as Ashleys where ours is covered.We are thankful for a decent vehilce to drive back and forth, we have had to travel in bad weather several times but have always felt lifted to and fro.We have angles around us all the time, in one form or another. we have eachother and our time is so much more precious. Somedays our life seems so normal and i actually shock myself again remebering that yes we have cancer. we are finding ways of coping by meeting other parents on the ward , educating ourselves , talking, reading ,praying and becoming involved in the perks of this (lack of a better word) teen groups, support groups and recenlty an upcoming fundraiser which we would like to tell you about. April 26 Stefanny and Darcy will shave their heads at a balding for dollars fundraiser at BCCH ,balding for dollars is an organization which supports the oncology dept. patients and their families. Stefanny is accepting pledges in person and online.baldingfordollars.com click on sponsor a shavee enter stefanny lowey and follow the donation prompts. Again we thank all of you for everything i just can't begin to tell you how much it has meant to us, we are forever grateful, although cliche it really shows you who your friends are. We will keep you posted as time goes on. Right now we are trying to live in the moment and we don't overplan anything(very difficult for a control freak) realizing what is in our control and what is not.This along with patience and faith (still learning the meaning of that) are the lessons thus far .Drop us a line.if we can't get back to you right away please forgive us Much love and peace. The Lowey Family
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