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Family Matters:  WE'RE HOME!!  |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
 Posted - Jan 24 2008 : 9:26:33 PM
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First let me say that I feel like a real jerk for not keeping you all better updated! You Farmgirls have been OVERWHELMINGLY tremendous is every way imaginable and I am just so deeply grateful.
Mima, I am wearing the necklace...the whole gift you sent, apron (with towel sewn on)...so fabulous! the books, the hankie, the picture on and on!! Thank you thank you!! The goddess necklace will be worn....OUT! I love it!!
Patricia, I received the Blessed Water today too from Lourdes!! I can't begin to tell you how much that means to me. I was raised a Catholic but there's a great deal about Christianity that over the years has stopped resonating with me for one reason or another. Yet, the saints and their examples of devotion and commitment...the miracles that make their presence on earth so worthy of reflection! Thank you so much!!
Rebekka Mae, the visit with you in the hospital has been, no lie, my life-line! I've had that feeling of "HELP!! I'VE FALLEN & I CAN'T GET UP!!" and I think of you and suddenly I'm well...There's something about you girlfriend that is just so massaging to my spirit. I am deeply, deeply indebted!!
THANK YOU THANK YOU THANK YOU for all the warm wishes...emails.....gifts......food!! April, the cookies were TOO DIE for!! I could go on and on!!
But here's where we stand with our little Miss Aria: She is responding SUPER well to the chemo and the steroid so far..some side effects...a little nausea and some aching but TOTALLY manageable at this point. Her blood levels ( red blood cell count, platelets and white blood cells) etc have been coming down but have not bottomed out, which is great. So, far, she hasn't needed to have a blood transfusion, which is VERY common but a HUGE bummer...here's hoping we can skip that hurdle altogether. We'll see..Its a day to day thing! She's had moments where her spirits were real low and other moments when she was like the same ol' wacky Aria! Its been an incredible ride. Just so you know, when I get on this ride with her..when she's screaming for one reason or another...when Reo is completely burned out...When Rianna has tripped over something or wants to smack Aria's central line port and I don't let her...when all this is happening at once I visualize this AMAZING seat belt comprised of hands...all of your hands holding me securely and safely. I know with great confidence that I can endure whatever that particular moment has to offer! It has been so comforting to me...so again, thank you!!!
Tmw is another BIG day for Aria...another spinal tap and bone marrow biopsy...it will dictate what we have to do for the following week...chemo once or twice a week..another spinal tap..etc..etc.. all of this is on an outpatient basis now. VERY cool but also VERY scary....just a lot to juggle and a lot of WAITING...this experience will totally test my creativity to keep 3 kids amused for hours and hours..For tomorrow's procedure we have to check in 3 1/2 hours EARLY and then she has her procedure and then she wakes up/recovers etc..and THEN we can go home. Its an all day thing...I'm equal to the task...at least I keep telling myself that I am! I've had many people offer to watch the kids and I'm not ready to let them do that yet. Keeping them close to me, as crazy as it can be, has been strangely comforting. That, and I want us to experience this outpatient world (our new normal) together.
We are in a phase of treatment called Induction. Aria is receiving a pretty heavy hitting chemo drug..not a super gun but a pretty good one...We'll be in this phase for a month. Her hair will thin and begin to fall out. Totally just part of it. We can expect to go to the outpatient Oncology clinic at least once a week if not twice or more..just depends...Then we go through another phase (can't remember the name) that is also hard hitting...same kind of thing..slighty different regime..then we are on a lighter chemo in the next phase..a sort of maintenance protocol and then a final hard hitting one..where at this time she'll be bald for a period of time. This is about a 6 month process or so...This is not including the hospitalizations that she'll probably have to endure because of a suppressed immune system. She's already in the place where we are not allowing visitors to come..just too risky..She's exposed enough with Reo going to school. I've been asked if I considered pulling him and homeschooling and the answer is no. Reo LOVES school and it is his normal right now..It is something that is just for him and I think maintaining that is important. So there are a ton of variables out there and loads of hurdles for us to cross.. I am terrified and calm at the same time. I'm completely insecure and confident too...It is the most bizarre feeling!
I take great comfort in knowing that Aria is doing so well.. Many many kids have to remain hospitalized for the first month phase of chemo. We had to stay only 8 days and that includes the 2 days it took to get all the final results of her diagnosis...I'm hopeful that she'll stay strong...I have to be hopeful...Aria will received in total 2 1/2 YEARS of treatment!! After all this major chemo action, she'll be on a once a month chemo regime for another 2 years..They've learned over the years that this protocol is tried and true...85% cure rate and sometimes higher..depends on who you read...They know if they blast the leukemia really hard at first and wipe them out, the body has a better chance of rebuilding healthy cells. However, they've learned that if the body doesn't get consistent hits with chemo over a long period of time the leukemia comes back 100% of the time and it tends to be worse...So, we are in it for the long haul..
I tell you, as natural and organic as I like to think myself to be, THANK HEAVEN for modern medicine! Yeah, this chemo is nasty toxic stuff but she has no measurable leukemia cells in her body already! It is just incredible...The medical staff we've worked with has also been beyond the beyond incredible. I have only praise for everyone who worked with us. Those poor nurses.....I swear, my stress hormones were in over-drive so big time that I just s.t.a.n.k!!!! I'm pretty earth and all natural enough as it is but this was some serious B.O!!!
Ladies, your warmth and generosity is something I'll carry with me each and every single day...especially during the upcoming days when I'm totally burned out and sick of it...Thank you thank you so much!!
All my love to you! ~julia hayes
ps..Please forgive me for not posting sooner about Aria let alone about the things that are going on in your lives..I've been reading them but its all the energy I've had...will be posting soon!!!!
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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KYgurlsrbest
True Blue Farmgirl
4853 Posts
Jonni
Elsmere
Kentucky
USA
4853 Posts |
Posted - Jan 24 2008 : 9:34:36 PM
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Oh my gosh! Yep, Julia, YOU should be apologizing, cause, I have NO idea what you've been up to and why you don't write????
Silly girlie...I'm just really thrilled that you are back in your beds at home and that you sound, to me, like you're all meeting this head on. What else can you do? Little Aria sounds to me like she is hanging in there, and she will continue to do so. Remember, they are often so much stronger than we give them credit for.
I have learned such lessons from you and your family during this. Get some rest and give some love to that little sprout.
Jonni
Farmgirl Sister #80, thanks to a very special farmgirl from the Bluegrass..."She was built like a watch, a study in balance ... with a neck and head so refined, like a drawing by DaVinci"...
NY Newsday sportswriter Bill Nack describing filly, Ruffian.
http://www.buyhandmade.org/ |
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Alee
True Blue Farmgirl
22941 Posts
Alee
Worland
Wy
USA
22941 Posts |
Posted - Jan 24 2008 : 9:35:17 PM
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Julia! You sweet lovely mama! You are doing such a great job! Please don't worry about how often you post here! Our dear sweet Rebekka has been keeping us updated and we think about you, Aria, and family every day!
Let us know if there are head scarves or something that we get get/make/send to Aria to make the bald period easier on her. Maybe we should all shave our heads in support? :D
Alee
Farmgirl Sister #8
Please come visit Nora and I our our new blog:
www.farmgirlalee.blogspot.com |
Edited by - Alee on Jan 25 2008 04:36:16 AM |
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mikesgirl
True Blue Farmgirl
3659 Posts
Sherri
Elma
WA
USA
3659 Posts |
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PlumCreekMama
True Blue Farmgirl
730 Posts
Heather
Iowa
USA
730 Posts |
Posted - Jan 24 2008 : 10:18:29 PM
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| Julia- it's good to hear things are going so well. Aria sounds like one strong little girl! So much to go through as such a young age. Good thing she has such an awesome mom there for her. I'm here for you if there's anything you need. Alee's idea with the head scarves is good. And I'm not completely opposed to shaving my head in support! :)I am so glad you are at home where you all can be more comfortable. I know how boring it can be for kids in the hospital. Aria continues to be in my thoughts and prayers. |
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Lavendar fields dreamer
True Blue Farmgirl
1032 Posts
little monkeys mommy
washington
USA
1032 Posts |
Posted - Jan 25 2008 : 01:35:34 AM
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good to know that your home. the nurses are always wonderful they have such good hearts and just seem to ooze love and care when you need it. there is some nasty cold going around just to let ya know my kids brought it home and i caught it, just thought i would give ya a heads up since we live in the same area(different schools though but it still seems to be the same stuff that goes around) anything ya need just holler, maybe dinner for those long days after outpatient treatment.
lavendar girl |
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mima
True Blue Farmgirl
1573 Posts
1573 Posts |
Posted - Jan 25 2008 : 03:56:34 AM
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Ju;ia!!! A million hugs !!! I'm soo glad things are going soo well!I think about you all the time! My son's wife's sister had leukmia when she was 2- went to college, got her degree, now she is a vibrant 26 year old!!And she was in my son's wedding!
So here's to getting through this blip on the radar and to a beautiful bright future for Aria!!! College graduation and lots of dancing at her wedding!! Wish I could have a glass of wine with you mon amie!!! Hugs!!!
"No pessimist ever discovered the secrets of the stars,or sailed to an uncharted land or opened a new heaven to the human spirit." Helen Keller |
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jpbluesky
True Blue Farmgirl
6066 Posts
Jeannie
Florida
USA
6066 Posts |
Posted - Jan 25 2008 : 05:42:00 AM
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Julia - thank you so much for the long update. You are doing an amazing job and keeping a good outlook. So proud of all of you, and praying for you each day.
Farmgirl Sister # 31
Psalm 51: 10-13 |
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Firemama
True Blue Farmgirl
1731 Posts
Amanda
Medical Lake
WA
USA
1731 Posts |
Posted - Jan 25 2008 : 07:36:05 AM
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Julia thank you for the update. I a so happy to hear the positives of all this. I have no doubt Aria will thrive with the love from your family and the prayers and the quite impressive medical technology. You are obviously a very strong women. Dont forget on those rough days that many of us are and will be praying for you through all of this !!
I will be a Medical Lake neighbor soon, so if you ever wanna talk or anything I'll be close. Take care and give Aria and the other children hugs from all your Farmgirl sisters.
Mama to 2
I am who I am
FarmGirl# 20
http://myfarmdreams.blogspot.com/
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Edited by - Firemama on Jan 25 2008 11:12:06 AM |
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Utahfarmgirl
True Blue Farmgirl
1940 Posts
Portland
Oregon
USA
1940 Posts |
Posted - Jan 25 2008 : 10:42:41 AM
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Julia, isn't it wonderful that Aria chose you for a Mommy? Some smart cookie.
love,
Patricia
Proud Farmgirl Sister #19
Rusty Chicks Chapter
check out my etsy site http://ThePlayfulFarmgirl.etsy.com
Take me home, country roads |
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Lainey
True Blue Farmgirl
2401 Posts
Elaine
Waco
Kentucky
USA
2401 Posts |
Posted - Jan 25 2008 : 10:56:58 AM
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Julia, I'm glad to hear that you all are home now. I've had you all in my thoughts and prayers this week. I know you've got a lot going on right now but please take care of yourself too and rest up. I'm sending warm thoughts and hugs your way.
Farmgirl Sister #25
http://countrygirldreams.blogspot.com/ |
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catscharm74
True Blue Farmgirl
4687 Posts
Heather
Texas
USA
4687 Posts |
Posted - Jan 25 2008 : 11:00:06 AM
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Julia- thank you for the update and I hope all is well for you and your family!!! I think about you often and I hope and pray for you everyday!! Sending all my love and hugs and peace that I can.
Cheers,
Heather |
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Nancy Gartenman
True Blue Farmgirl
9093 Posts
Nancy
West Seneca
New York
USA
9093 Posts |
Posted - Jan 25 2008 : 11:20:58 AM
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We are all thinking of you and your family Julia. This must be very hard. Thanks for the update. Let us hear from you whenever you have time, we all care.
Nancy Jo
www.Nancy-Jo.blogspot.com |
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Annika
True Blue Farmgirl
5602 Posts
Annika
USA
5602 Posts |
Posted - Jan 25 2008 : 12:36:29 PM
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Julia, we are all here for you and your family.You are super brave and awesome with what you are going through with Aria, and (B.O. and all) I'm sending you big, big hugs and warm healing and strength energy to get through this. Aria too. Thank you for updating us on everything. Prayers still coming every day.
Many blessings
Annika
p.s. yes, if we can make hats or scarves or such little gifts to help Aria through things let us all know. just let us know. I think we are all just waiting for the "yes" word to start sewing :P |
Edited by - Annika on Jan 25 2008 12:42:39 PM |
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queenofdreamsz4u
True Blue Farmgirl
3845 Posts
Stephanie Suzanne
Smoky Mountains Tennessee
USA
3845 Posts |
Posted - Jan 25 2008 : 1:01:03 PM
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Julia,
I've emailed you asking for Aria's head diameter and the measurement from the crown to over her ears. I would like to crochet her some artful caps to wear! Please let me know what her favorite colors are.
I'm right outside of Memphis, Tennessee right now and St. Judes children's hospital is there. I've read at their site that they are seeing as high as a 94% recovery rate! This is so fantastic....I know that Miss Aria is going to do just fine and come out as a new shining star.
I know you are reading the replies here on this topic. I know you don't have time to post but if you could just pop a reply of the measurements that would be wonderful..
I also want to know which hospital (name, city and state) so I can add them to my charity directory. I'm sure they must have other children there in the PICU that would love a pretty cap as well
Blessings to everyone,
Stephanie
"Idealists…foolish enough to throw caution to the winds…have advanced mankind and enriched the world." ~ emma goldman
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abbasgurl
True Blue Farmgirl
1262 Posts
Rhonda
USA
1262 Posts |
Posted - Jan 25 2008 : 1:19:40 PM
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Julia, it's so good to hear from you, and so good to hear you doing so well! I continue to think of you & pray for your family!
Blessings to you Dear,
Rhonda
I'm a one girl revolution. |
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willowtreecreek
True Blue Farmgirl
4813 Posts
Julie
Russell
AR
USA
4813 Posts |
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BarefootGoatGirl
True Blue Farmgirl
1495 Posts
Corrine
North Carolina
USA
1495 Posts |
Posted - Jan 25 2008 : 2:23:53 PM
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more love and hugs coming your way. i'm glad to hear you are both home and still fighting.
What we write today slipped into our souls some other day when we were alone and doing nothing.
-Brenda Ueland
http://quilandneedle.blogspot.com/ |
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CountryBorn
True Blue Farmgirl
1545 Posts
Mary Jane
New York
USA
1545 Posts |
Posted - Jan 25 2008 : 7:19:04 PM
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Julia, I am so glad to hear that Aria is responding so very well to treatment. You are a wonderful mother,you are doing an excellant job of being there for your whole family. I so admire your courage and positive attitude. You know there may be hard times but you also know you can handle them. May God continue to bless your beautiful little girl and all of you.
Blessings. Mary Jane
There can be no happiness if the things we believe in are different from the things we do. Freya Stark |
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Tammy Claxton
True Blue Farmgirl
1559 Posts
Tammy
Glen Burnie
Maryland
USA
1559 Posts |
Posted - Jan 25 2008 : 7:29:08 PM
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I'm so happy to hear that Aria is doing well with her treatment. I have been thinking about her since I first read about this. I have been lighting a candle for her everyday and saying a prayer for that beautiful littel girl! Many prayers and lots of love are flowing your way, friend. Hugs for you and your family!
What doesn't kill you only makes you stronger!
http://countryintheburbs.blogspot.com/ |
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CabinCreek-Kentucky
True Blue Farmgirl
8529 Posts
Frannie
Green County
Kentucky
USA
8529 Posts |
Posted - Jan 26 2008 : 09:11:46 AM
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sweet julia .. i am so sorry i never saw your original post. my love and prayers are with you and dear little aria .. and your family .. for complete recovery. if there is anything any of us can do for you or aria .. please let us know. (how old is aria .. i want to send her a gift). hugs to you and your dear one. love, frannie
True Friends * Frannie
HEAR MY STORIES
come, visit my:
"GATHERING ROOM" ..
http://freedomvalleyfarm.blogspot.com
adopt a 'rag-chile'
http://sistermercysfoundlinhome.blogspot.com
treasures .. new and olde .. up for adoption:
http://mudpiemanormercantile.blogspot.com
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yarnmamma
True Blue Farmgirl
4247 Posts
Linda
Clarks Summit
PA
USA
4247 Posts |
Posted - Jan 26 2008 : 1:23:14 PM
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so glad you are home! I'm lighting a candle for meditation just for you. (((((huggggs to you and the family)))) luv ya!
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May we always be in thankful contemplation of HE who presides over us all.
Big Book of Alcoholics Anonymous
farmgirl #71 Linda in PA |
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windypines
True Blue Farmgirl
4228 Posts
Michele
Bruce
Wisconsin
USA
4228 Posts |
Posted - Jan 26 2008 : 4:31:08 PM
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*--**--**--**--**--*
Tried to make a picture of holding hands. I loved that in your post. I can picture everyone holding hands, a big prayer circle around you and your family. Hang in there kido.
Michele |
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Carol Sue
True Blue Farmgirl
4033 Posts
Carol Sue
Washingtonian
USA
4033 Posts |
Posted - Jan 26 2008 : 5:19:11 PM
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Julia,
Thanks for the updates. When my mom was in treatment, visitors weren't allowed either. The immune system has enough to try and deal with.
Hugs to each and every member of your family because when one goes through a trama, all do. Each step will take wisdom and you have a wonderful wealth of it. We will stand by you in prayer and cyber hugs for now.
btw, no apologizes even needed here. Use your energy for the tasks at hand.
CS
listening to the quiet moments
Farmgirl #39
www.Quitemoments.blogspot.com |
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junkjunkie
True Blue Farmgirl
1306 Posts
Judy
Lawrenceville
NJ
USA
1306 Posts |
Posted - Jan 27 2008 : 06:04:50 AM
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Julia, I'm so glad to hear you are home and Aria is responding well to her treatment! You are a great Mom, and Aria is very lucky to have such a wonderful family. Thank you for the update.
"To have life in focus, we must have death in our field of vision." Benedictine monk John Main |
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Mumof3
True Blue Farmgirl
3890 Posts
Karin
Ellenwood
GA
USA
3890 Posts |
Posted - Jan 27 2008 : 06:12:13 AM
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Julia- I am so glad you are home and that Aria is responding so well to the treatment so far. You will continue to be in my thoughts and prayers. Your lovely little daughter's picture is taped where we all can see her(on the refrigerator!) and say a little prayer or think a happy thought for her as we pass.
Much love to you and your family.
Karin
Farmgirl Sister
# 18 :)
Wherever you go, there you are.
www.madrekarin.blogspot.com |
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Family Matters: WE'RE HOME!! |
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WE'RE HOME!!
