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Family Matters: Aria Update ![Next Topic Next Topic](icons/icon_go_right.gif) |
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julia hayes
True Blue Farmgirl
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1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Feb 07 2008 : 4:56:00 PM
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Farmgirl Sisters! I feel I owe you all an apology for not keeping you better informed. I've been writing this mass email to family and I've been reading many posts but just haven't have much energy for anything more. I wish I had. I so need a creative outlet and am finding a few minutes here and there to sew, which has been a life-saver for me. So many of you are dealing with really hard things and my heart is with you despite that I have not said so.. Those of you opening new etsy stores and doing your wonderful things are just inspiring to me right now. I just love this connection. It is such a boost of good ju-ju for me!
Today, has been a really good day though so I have a little extra in me to let you know how we are all doing. Aria had a bone marrow biopsy last week that showed NO leukemia cells. She is called an "rapid early responder", which is what we were hoping for. It means that she is responding super well to the chemo AND it means that we don't have to go through an extra 2 weeks of steroid treatment as well as other meds. This is such a huge relief! The steroid that she takes is awful. It has completely changed her taste buds and has effected her personality a little too. She is an emotional roller-coaster on top of already being 4 years old. She craves salty foods and junk food and incessantly asks for things she knows she can't have. It is hard to deny her a quick cheezie burger and fries from McDonald's but there is just absolutely nothing healthy going on there. The fact that her body is already so ill does not motivate me to fill her up with more junk despite her pleas for it. I have had to be tenacious and consistent and creative in offering her healthier choices. She is doing pretty well. I just wish she would crave steamed broccoli or healthy bran cereals with yogurt. The things she enjoyed before. We have only one more week!!!
Aria has no energy for much of anything. She doesn't want to play. She doesn't want to color or paint or play with playdough. She seems sad and distant a lot of the time. There are moments when she is spunky and the ol' fairy-like Aria I know..but for now she just isn't feeling well and is doing her very best to just be a kid. I have my moments of real sorrow about that for her. I try to hang onto those moments of pure cheer and knowing that her life will be saved as a result of what we are enduring now makes all the difference in the world to me. I can not even imagine those parents 40 years ago whose children died because of this. When I do think of that, knowing full well there are people in the world now who don't have access to the kind of health care needed to treat this illness, I can literally feel my heart being ripped out of my body. I ache all over. I take one look at Aria and crumble in relief knowing that she is alive now and now is all that matters!
We are still going to the oncology outpatient clinic every Friday. That will continue for the next several months. We are just doing everything we can to keep her as healthy as possible so she can stay out of the hospital. I'm more relaxed about that idea. It seems like an inevitable thing and knowing what I know now, I'm more confident.
I can't tell if her hair is starting to thin or if I'm just imagining it. I'm still having a hard time with that, not because I'm bummed that she'll be bald but because it is such a HUGE reminder of how sick she is. As strong as she is, she is still so fragile. Even though she's a tough warrior, she's only 4 years old. Its also hard because no one has told me what the process is going to be like. I'm such a detail person that I want the play by play. I hear things like, "Oh, it is such a mess!" or "you're going to be changing pillowcases right and left." or "Its so itchy!" But I wonder, "how do people feel? Are they scared? Do they grieve?" A friend mentioned to me that the way people have tried to ease me into it has been lacking in any kind of grace and I find that true. To these professionals, hair loss is so the least of their concerns and I understand that completely. But to me, as the mother, it is a huge reminder...it is not something I can deny about her illness. It is yet another big change that I must experience and I have not had anyone resonating with me in that regard. Its ok on one hand..I'll write about it and that will be so helpful...
One day at a time..one day...
Allow me to take this moment to send out huge thank you's to the following sisters;Debi, Lea, Patricia, Meg, MaryJane, Rebekka, Lisa, Sara, Tracey and Allyson McHenry, Lainey Heather, Sherri, and Miss Wilma. THANK YOU!! I fear I have forgotten someone.. PLEASE forgive me..So many wonderful cards and gifts. I really am speechless and so very very grateful. Thank you so so so much! You have no idea the light you have brought to my home and my farm and my life. These wonderful tokens of friendship and sisterhood have been nourishing me. It is just amazing. I am so completely in awe of every single one of you and determined to meet you all someday!
Please continue to keep us in the light. Also know that even though my posts are few, I always have my candles lit celebrating you! All my Love, ~julia
being simple to simply be Farmgirl #30 www.julia42.etsy.com |
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Alee
True Blue Farmgirl
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22941 Posts
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Alee
Worland
Wy
USA
22941 Posts |
Posted - Feb 07 2008 : 5:08:13 PM
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Julia- You are an amazing mother and your kindness and compassion to others in this time is truly amazing. No one would fault you in the least if you selfishly only thought of yourself and your family, but you take time to keep us updated and to worry about other children in the world. You are wonderful.
Perhaps Aria can have saltyish organic foods? I hope you find a balance with her tastebuds and I am sure soon she will want to go back to the good stuff and not crave the junk so much. I too love to know what is going to happen and when so I can sympathize with your anxiety and frustration with the explanations given to you so far. Maybe you should write a guide to childhood cancer treatment for other moms? Kind of a "What to Expect during Chemo and Radiation"?
Alee Farmgirl Sister #8 Please come visit Nora and I our our new blog: www.farmgirlalee.blogspot.com |
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katmom
True Blue Farmgirl
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17161 Posts
Grace
WACAL Gal
WashCalif.
USA
17161 Posts |
Posted - Feb 07 2008 : 5:10:59 PM
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hugz to you and Aria,
>^..^< Happiness is being a katmom. mjf#72 Sisters on the Fly#472 www.katmom4.blogspot.com |
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Annika
True Blue Farmgirl
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5602 Posts
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Annika
USA
5602 Posts |
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Firemama
True Blue Farmgirl
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1731 Posts
Amanda
Medical Lake
WA
USA
1731 Posts |
Posted - Feb 07 2008 : 5:19:16 PM
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Julia you are SO amazingly strong. I am so sorry you guys are going through this.I am continuing to keep you in positive thoughts and the great light. Stay strong
Mama to 2 I am who I am FarmGirl# 20
http://myfarmdreams.blogspot.com/
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BarefootGoatGirl
True Blue Farmgirl
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1495 Posts
Corrine
North Carolina
USA
1495 Posts |
Posted - Feb 07 2008 : 5:33:25 PM
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Love and hugs. My kiddos and I have you in our thoughts and prayers.
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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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CabinCreek-Kentucky
True Blue Farmgirl
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8529 Posts
Frannie
Green County
Kentucky
USA
8529 Posts |
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Mountain Girl
True Blue Farmgirl
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806 Posts
JoAnn
Colville
Washington
USA
806 Posts |
Posted - Feb 07 2008 : 6:11:41 PM
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Julia, I so wish that you, Aria and your family didn't have to go through this. I think if I looked up "mother" in the dictionary I would see your picture, and if I looked up "strong" and "brave" there would be Aria's picture. Love to you and your adorable family. JoAnn |
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abbasgurl
True Blue Farmgirl
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1262 Posts
Rhonda
USA
1262 Posts |
Posted - Feb 07 2008 : 7:25:37 PM
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Thank you for taking time to update us Julia. It sounds like all good news right now! I pray for your strength and peace, as well as for Aria's complete healing of course! Wonderful to hear her good report! Blessings, Rhonda
I will sing at the top of my lungs, and I will dance even if I'm the only one...
http://www.kattywhompus.etsy.com |
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PlumCreekMama
True Blue Farmgirl
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730 Posts
Heather
Iowa
USA
730 Posts |
Posted - Feb 07 2008 : 7:41:59 PM
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I am so sorry to hear of the terrible time Aria is having. I hope she gets better very soon. I'm glad she is responding well to treatment. I know what it's like to have a sick child that isn't themselves because of the disease and the medicine, and I hope it doesn't take too much longer so Aria can get back to being herself again. Much love and hugs to you all! |
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nubidane
True Blue Farmgirl
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2899 Posts
Lisa
Georgetown
OH
2899 Posts |
Posted - Feb 07 2008 : 8:02:04 PM
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Julia You & Aria are pure light. Farmgirl Strength & Blessings to you and your Brave Beauty |
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mima
True Blue Farmgirl
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1573 Posts
1573 Posts |
Posted - Feb 07 2008 : 9:21:39 PM
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Hey Sweetie!!! I'm sooo looking forward to meeting you in May when I come to Spokane!! Maybe by then things will be soo much brighter!! We have date for a glass of wine sister!! I'll bring some up!! Many hugs and love! Know that you and Aria are in my thoughts constantly!! And the picture of your braids is on my refridgerator!! Love U!!!!XXXXOOOO
"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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queenofdreamsz4u
True Blue Farmgirl
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3845 Posts
Stephanie Suzanne
Smoky Mountains Tennessee
USA
3845 Posts |
Posted - Feb 07 2008 : 9:45:41 PM
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((((Hugs and Love))))
Stephanie
"Idealists…foolish enough to throw caution to the winds…have advanced mankind and enriched the world." ~ emma goldman
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mikesgirl
True Blue Farmgirl
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3659 Posts
Sherri
Elma
WA
USA
3659 Posts |
Posted - Feb 07 2008 : 9:52:35 PM
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Thank you for taking the time out and giving us an update. You and Aria are in our thoughts and prayers every day. It's heartening to hear that Aria is a "rapid early responder" - such good news. I know it must be harder than we can imagine to see your precious daughter not wanting to play and be herself. But, you know it's for the greater good, and somehow you will get through these times. Know you have the strength of many farmgirls pulling for your family and that is mighty.
Farmgirl Sister #98 Check out my new online store http://www.shopthefrontier.com/VFstore/index.php?manufacturers_id=79&osCsid=6be4b25bf9555031c6e2e86bbde23dba |
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Utahfarmgirl
True Blue Farmgirl
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1940 Posts
Portland
Oregon
USA
1940 Posts |
Posted - Feb 07 2008 : 11:25:15 PM
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Julia, your word for today is "gratitude".
much love, Patricia
Proud Farmgirl Sister #19 Rusty Chicks Chapter
check out my etsy site http://ThePlayfulFarmgirl.etsy.com
Today I choose faith not fear. |
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cajungal
True Blue Farmgirl
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2349 Posts
Catherine Farmgirl Sister #76
Houston Area
Texas
2349 Posts |
Posted - Feb 08 2008 : 03:50:08 AM
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Julia, y'all are amazing. Thoughts and prayers continue.
Blessings Catherine
One of the best compliments from one of my daughters: "Moma, you smell good...like dirt." |
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CountryBorn
True Blue Farmgirl
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1545 Posts
Mary Jane
New York
USA
1545 Posts |
Posted - Feb 08 2008 : 07:12:46 AM
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Julia, I can't express how happy I am that Aria is responding so well to her treatments. What a blessing. I can fully understand what her losing her hair means to you. It is a constant reminder that she is so ill. But, my friend tried to think of it in a positive light, she may of lost her hair but, it meant she was getting better too.It will grow back and be new and beautiful again, just like her whole new beautiful chance at life. It is so good that you come on her and talk about your feelings and fears. You have to have an outlet,I am sure you are tring to put on a happy positive face all the time for Aria and everyone else. Sometimes you just need to say what you really feel,fear, anger,anxiety. It makes it so much easier to cope with all that is happening in your life. I truly believe she will be fine. All this will have been worth it.I pray for Aria you and your family. Thank you for being so kind as to share this with us.
Hugs and prayers 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
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1559 Posts
Tammy
Glen Burnie
Maryland
USA
1559 Posts |
Posted - Feb 08 2008 : 08:20:23 AM
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I just caught the post and I am so thrilled that Aria is showing progress! I continue to keep her in my prayers and hoping that she makes a rapid recovery. You're such a strong woman, I admire you. Thank you for keeping us posted on her progrress. I know time is valuable to you and it's very thoughtful of you to keep us updated. I'm sending tons of love and prayers your way! Stay strong and take care!
"A friend is someone who does things that count, but never stops to count them"
http://countryintheburbs.blogspot.com/ |
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blueroses
True Blue Farmgirl
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1323 Posts
Debbie
in the Pandhandle of
Idaho
USA
1323 Posts |
Posted - Feb 08 2008 : 08:53:36 AM
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Julia, I've been reading of your struggle and the strength that you provide to your daughter. My thoughts and prayers are with you and your family. It's so good to hear that Aria is responding so well. Sending my love and light to all of you.
"You cannot find peace...by avoiding life." Virginia Woolfe |
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Lainey
True Blue Farmgirl
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2401 Posts
Elaine
Waco
Kentucky
USA
2401 Posts |
Posted - Feb 08 2008 : 12:16:52 PM
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Julia, I'm so glad to hear she is a rapid early responder. That's the best news I've had all week! You and your family have been in my thoughts a lot this week and I will continue to keep you all in them and in my prayers. Thanks for the update and I'm sending more warm healing thoughts and hugs your way.
Farmgirl Sister #25
http://countrygirldreams.blogspot.com/ |
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Carol Sue
True Blue Farmgirl
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4033 Posts
Carol Sue
Washingtonian
USA
4033 Posts |
Posted - Feb 08 2008 : 3:42:45 PM
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Julia, Hugs Hugs Hugs and prayers. Carol Sue
listening to the quiet moments Farmgirl #39 www.Quitemoments.blogspot.com |
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