| T O P I C R E V I E W |
| julia hayes |
Posted - Apr 13 2009 : 9:08:02 PM
It has been since Aria's last hospital stay that I've written a word about her and I thought you might want to know what's been going on.
She is doing so well. We've had 3 weeks of a revolving door kind of virus that's been going 'round and 'round and 'round in our family. Aria has remained healthy. You CAN imagine my relief. As I imagine you sitting there reading this, I can see your shoulders relax in relief and hear a faint, "phew!". That is it exactly!
PHEW!
Aria is running. She is riding a brand new bike that has training wheels and a matching helmet. She is fully of pixie energy that I can't imagine trying to contain. I only wish she had more opportunity to sprinkle her pixie dust and magic on more people!
Today we went to clinic as we have done weekly for the last month to monitor her 'counts'. She is highly sensitive to the chemotherapy so slight alterations to her regime can have quick and not so nice results. She's been stable for 3 weeks! Today the focus was meeting with her oncologist to review her medication ( she takes a minimum of 3 drugs a day twice a day that can increase to 5 or more twice a day!) I know, it is amazing. She never complains. She never fusses. She never fights about it. It is as routine to her as brushing her teeth or going to the bathroom!
We also reviewed with her doctor her overall progress; her ankle/foot extension which has dramatically improved with consistent stretching at home. They mentioned possibly pursuing leg braces several months ago and I was devastated about it and asked a second opinion for more options. That is resolving nicely. Her weight was discussed because kids who take steroids as regularly as she does are at risk for getting overweight and developing diabetes. She is already developing a sort of barrel chest and belly, which is also very common. It doesn't help her that she has a mother with a horrible sweet tooth that she's unfortunately inherited! Our Dr. didn't have any concerns at all at this point and encouraged us to continue doing what we're doing.
The last and most important thing we did was just get her ready for her spinal tap tomorrow. She gets one every 3 months and they inject chemotherapy into her spinal fluid. It is so hard for my husband and I but she takes it all in stride. We, for whatever luck we had, started using language with her very early on that referred to this potentially VERY scary procedure as "A Dream!" So Aria now says, "Hey mom, I get to go have a dream. I don't mind those things. Then when I wake up I can eat! They are so nice to me when I have my dreams. I'll be ok." Aria is 5 years old.
She is fully sedated when she has the procedure so she is completely unaware but it is still a highly sensitive procedure. I pace like a caged animal until it's done. I keep my son out of school for it and we are a united front for her.
You know, it sometimes feels really routine. We are in such a different place than we were a year ago. Aria isn't vomiting every single day several times a day. I'm not carrying her everywhere. She is playful and joyful. She giggles and likes to tell poop and pee stories. I can see the progress. I have so much hope! Yet, there is nothing routine about this.
Today at clinic there were many new faces. New families dealing with cancer in their children for the first time. 52 children every day are newly diagnosed with some form of cancer. Most of them survive for a period of time many living well into adulthood. Many others do not. I saw a boy today I hadn't seen in 5 months. He went through 2 stem cell transplants. I don't even know what that means. I didn't have it in me to ask his mom who I like so much. I stood before her speechless. Her son was playful but he was gray, bald, and had a feeding type tube dangling from his nose. My heart breaks every single time I go to clinic and I go there almost once a week. It is a weird thing to live with a chronically broken and repairing heart. Today as I thought about this mother, I thought, "Wow, the capacity people have is just incredible." She's an inspiring person as is her son!
So their story is interwoven with mine. Theirs and the many others we encounter. Aria's leukemia is not experienced in isolation. She is doing so well but we remain surrounded by real possibility, by prognosis's in others that are not favorable, by families getting ready to say good-bye, by families celebrating the end of chemo, which we also saw today. A young teen aged girl just finished chemo today. Tears all over by everyone! It was glorious. She will now be followed for the next 10 years with clinic visits every 3 months. I didn't ask what kind of cancer she had...it's intense no matter what kind.
So tomorrow is Aria's spinal tap. I have to believe everything will be fine. I really do believe that too. She'll feel lousy come Wednesday and will sort of deteriorate for the next few days. We'll just ride it out.
In spite of it all, we are truly so blessed. There is so much hardship that we have to face, but there's also this overwhelming sense of normal too. Aria lost her first tooth today. Aria has survived to lose a tooth. Tonight the tooth fairy will come and sprinkle glitter all over her room and her! I hope I remember to open the window a crack otherwise, there's always a glitter splatter on the window where she crashed! So you see, sometimes I have to sit in despair a while. I have to remind myself of how intense it is for not only us but millions and millions of others the world over. Sometimes I have to project into the future and wonder and worry. Always I come back to where we are now.
We are infinitely better than a year ago. Aria is vibrant and doing well. She lost her first tooth. She's enjoying every moment of every day! She is a delight and my joy. She is magic and enchantment housed is the sweetest spirit. I am one lucky mom!
This is my Aria! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
| 25 L A T E S T R E P L I E S (Newest First) |
| frolicnfibers |
Posted - May 02 2009 : 4:58:17 PM
Aria looks like such a joy...what a beautiful child, and what a lucky mom you are! You all are in my thoughts and prayers, Di
Diana
Please come visit my animals and my Etsy store on my new blog!
http://www.frolicnfibers.blogspot.com
http://www.frolicnfibers.etsy.com |
| Tammy Claxton |
Posted - Apr 27 2009 : 06:02:14 AM
Just wanted to stop in and say that I am so glad Aria is doing well! Her picture is adorable and her hair is so cute with all those curls! I've been keeping you all in my prayers. I am so happy that you can breathe a little again! Go have that beer! You deserve it!
Crafty Bay Farmgirl Chapter
"What doesn't kill you will only make you stronger"
Farmgirl #152
http://countryintheburbs.blogspot.com/
http://bigdogmom130.etsy.com |
| electricdunce |
Posted - Apr 20 2009 : 05:52:08 AM
You are an inspiration to mothers, and women, everywhere. And your little Pixie is just such a trooper, pizza and coke sound brilliant after " the dream". I think of your family often and send healing energy in your direction all the time.
Karin
Farmgirl Sister #153
"Give me shelter from the storm" - Bob Dylan
http://moodranch.blogspot.com
http://domesticnonsense.etsy.com |
| Tina Michelle |
Posted - Apr 19 2009 : 8:54:16 PM
so glad that aria is doing so well. yay!
~I Dream of a Better World..where chickens can cross the road without having their motives questioned!~
blogs:http://gardengoose.blogspot.com/
and http://thevictorygardener.blogspot.com
magazine: www.stliving.net
etsy shops: http://GardenGooseGifts.etsy.com
and http://myvictorygarden.etsy.com |
| homemom |
Posted - Apr 16 2009 : 10:56:47 AM
Julia~Aria is a beautiful angel. I hope she is continuing to do well. What a long and difficult journey. How much strength you must need to be surrounded by so many who need encouragement and hope through the difficult treatments. How blessed they are to have you around.
Miss chatting with you. I know you're busy~did you get my email? I hope you have a good, sunshiney day.
Ruth
 Living the farm life in my heart.
http://www.homeschoolblogger.com/Ruth
http://farmgirlinmyheart.blogspot.com |
| Huckelberrywine |
Posted - Apr 15 2009 : 9:17:22 PM
Big hug. You make our hearts a bit bigger by your sharing. :) Remarkable girl and a remarkable family!
We make a difference. http://huckleberrywine.blogspot.com |
| kmbrown |
Posted - Apr 15 2009 : 4:16:17 PM
You're Aria is absolutely beautiful. Thank you for sharing your story as it touched my heart like you'll never know. My thoughts and prayers will be with you. |
| shepherdgirl |
Posted - Apr 15 2009 : 3:49:15 PM
A BEAUTIFUL little Pixie to put Tinkerbell and all those other pixies to shame! You can see that mischeivous little twinkle in those big beautiful eyes-- it's almost like she knows something the rest of us can only DREAM about.... it must be the Angels that surround her and bring her God's protection and Peace....
Hugs, blessings and Prayers to you all ~~~ Tracy
Life is not measured by the number of breaths we take, but by the moments that take our breath away. ~~ George Carlin |
| farmmom22 |
Posted - Apr 15 2009 : 2:01:17 PM
Oh Julia, what a precious little girl. I will keep you and your sweet daughter in my prayers. Tammy
http://afarmgirljourney.blogspot.com/
Farmgirl Sister #492
Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending. -Carl Bard |
| RuralSuburbia |
Posted - Apr 14 2009 : 7:31:15 PM
I'm so happy to hear she's doing well! And congrats for her first baby tooth falling out!
She's such a beautiful child, with those cheeks that beg to be nibbled....
*I've got stars in my eyes and exactly $1 in my pocket!* |
| Calicogirl |
Posted - Apr 14 2009 : 4:57:16 PM
I am so glad to hear that Aria's procedure went well Julia. She is such a sweet blessing! My prayers continue for Aria, you and the rest of the family for strength & comfort. What a sweetie she is :)
~Sharon
By His Grace, For His Glory
http://merryheartjournal.blogspot.com/ |
| Diane B Carter |
Posted - Apr 14 2009 : 4:00:32 PM
You are amazing, you are handling this so well. Your daughter is beautiful, I love the glitter from the tooth fairy, I never heard of that before and will use it in the future with my grandson. You are in my prayers.
Hope all your days are Sunnydays.
dianebcarterhotmailcom.blogspot.com |
| Jami |
Posted - Apr 14 2009 : 12:02:37 PM
Julia, I am following along...how's the Pixie this morning? I am thankful along with you that it went well and that the tooth fairy stopped by too! I had to just laugh reading about the poop/pee story. My nephew came for a visit last week (he's 4 now, 5 in July) and he is rather obsessed with the P/P talk, notably at the table while we're eating. We decided we should have a Potty Talk Olympics and have a nice healthy competition since he finds this so sporting. It must be the age?
I am touched by your report of the other children, the intersecting lives thing. It's so humbling to hear your little tidbits about them.
Hug the Pixie for us. And for goodness sake, have a beer and go to bed.
Jami in WA
Farmgirl Sister #266
http://cookecreeksheep.blogspot.com
http://cookecreekwool.etsy.com |
| Lainey |
Posted - Apr 14 2009 : 11:49:42 AM
Oh Julia, what a beauty Aria is! Inside and out. You can see it in her eyes. She's such an inspiration to me. She goes through her treatment as if it's the most normal thing in the world. I'm so happy things are going well with her. I'll be taking encouragement from that going through whatever treatment my surgeon comes up for me after the scan on Thursday.
Thank you for sharing her journey with us. And as always she's in my thoughts and prayers. You all are. Hugs!
Farmgirl Sister #25
http://countrygirldreams.blogspot.com/
An Angel says, 'Never borrow from the future. If you worry about what may happen tomorrow and it doesn't happen, you have worried in vain. Even if it does happen, you have to worry twice.' |
| lacisne88 |
Posted - Apr 14 2009 : 11:32:13 AM
She is so beautiful! Thank you so much for giving an update! I wish you all the best and good wishes through her spinal tap. :)
Chelsey
Farmgirl Sister #283
http://farmgirlpleasures.blogspot.com/
http://aminiatureworld.blogspot.com/ |
| corporatefarmgirl |
Posted - Apr 14 2009 : 11:03:07 AM
DOING THE HAPPY DANCE FOR YOU ~ A beer is perfectly OK...after all it is 5:00 somewhere!!!!!!
live well,
Tamara
www.thegoodearthfarm.com
"We do not inherit the earth from our ancestors, we borrow it from our children" http://thegoodearthfarm.blogspot.com follow me!
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| julia hayes |
Posted - Apr 14 2009 : 10:53:33 AM
It's all over and she did SUPER!!
What a relief! She chowed down on left-over pizza and coke afterward. Yeah, I'm all about organic healthy food!! Pizza and coke...the breakfast of champions!! Pardon me while I urp!! She LOVED it and that's what she wanted. A men sister I say.
It was 2 1/2 hours start to finish which was just about right. Clinic super busy again. Lives intersecting once again. Another family experiencing their very last day of treatment today and another with an infant who is very sick. The intensity on this mother's face. Oh, I just ached for her. My guess is that they are from Eastern Europe somewhere. They had an interpreter with them. So, a serious illness on top of language and cultural issues....just can't imagine! They were in the same recovery room as Aria so I was able to send them some loving good vibes. Mom at one point just stared at me. Her eyes were the only things I could see because she was in a mask and gown. There were several people surrounding her baby so I was concerned...the intensity of the room was something I just wanted to run away from, but I couldn't and I felt compelled to send her some strength. I just breathed for her....for them....for us.....
The kids are now watching a movie and I'm going to go veg-out and sew a little with them. I feel completely wiped out!! It's 11am and a nice cold beer sounds mighty good! If I do that though, I might as well just put myself to bed!
thank you all for being with us today... I could feel all the good energy coming our way keeping us steady...
much love and light! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
| corporatefarmgirl |
Posted - Apr 14 2009 : 10:16:58 AM
julia~ your story brought tears to my eyes. some for the saddness that any child should have to go through cancer ~ some for the beautiful innocence & strength that is given to chidren like Aria ~ and some for you ..the pain you've gone through, the joy of being able to see how far you have come & the wisdom you are sharing day in and day out is a reminder to us all that each moment is a gift
live well,
Tamara
www.thegoodearthfarm.com
"We do not inherit the earth from our ancestors, we borrow it from our children" http://thegoodearthfarm.blogspot.com follow me!
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| JudyBlueEyes |
Posted - Apr 14 2009 : 09:57:42 AM
Julia, Blessings on you and Aria and all today and every day as you journey through this life. Many hugs, Judy
We come from the earth, we go back to the earth, and in between, we garden! |
| vintagediva1 |
Posted - Apr 14 2009 : 09:46:56 AM
You show so much strength and optimism. I am proud to know you. I have walked the same walk and know how hard it is ti keep your spirits up. Thanks for the photos of Aria. She is amazing. Prayers and love are wending your way from Michigan.
Michele
www.2vintagedivas.etsy.com
Love that good ole vintage junk |
| NudeFoodFarm |
Posted - Apr 14 2009 : 09:08:51 AM
You and your loving family are an inspiration and demonstation of how strong the human spirit is. I love how you greet this experience as best as you can. Clearly Aria is a child full of love. Today I will keep you and all the families confronted by this darkness in a special light in my heart. May all the pixies accompany the toothfairy to sprinkle your home with TONS of blessings.
Julia ~Please reward yourself, guiltlessly, with a truck full of chocolate, because sister you desearve the best life has to offer.
Best,
h
Nude Food Farm
~Grown so good,
Dressing is Optional. |
| Annika |
Posted - Apr 14 2009 : 08:59:10 AM
You sure have been on the emotional roller coaster, haven't you? *hugs* I will always keep you , Julia, Aria and your dear family in my thoughts and prayers. I can't imagine how hard this has been and will continue to be. Aria is a beautiful little girl with goddess wise eyes and an angels face....even the one with her tongue stuck out =P
Blessings
Annika
Farmgirl & sister #13
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| ruralfarmgirl |
Posted - Apr 14 2009 : 08:45:30 AM
Julia,
What a ride you have been on. Even just reading about the adventure I find myself running the gammet of emotions just from the side lines.
You guys are in our thoughts and prayers.. R
Rene~Prosser Farmgirl #185
http://farmchicksfarm.blogspot.com/http://renenaturallyspeaking.blogspot.com/
Circumstances made us FRIENDS; MaryJane's has made us SISTERS :) |
| Deb H |
Posted - Apr 14 2009 : 07:46:24 AM
Julia, Aria is so beautiful! And you are both so strong to go through this. I know it doesn't feel like it all the time, but you truly are. I was heartbroken to read her story in the magazine and so thrilled to read the update! I will think of your family today, especially Aria, as she goes through her Dream and send Farmgirl Blessings and Love your way -
"Well-behaved women rarely make history" - Laurel Thatcher Ulrich |
| melody |
Posted - Apr 14 2009 : 07:35:32 AM
Julia,
Those great big beautiful eyes....Aria has stories to tell, just look at those eyes!!
Thinking good and peaceful thoughts your way.
Melody |
