| T O P I C R E V I E W |
| julia hayes |
Posted - Feb 18 2008 : 12:39:59 PM
Farmgirls!! Aria has completed phase 1 of her treatment and so far so good! We have 3 or 4 more phases to go before we hit the "maintenance phase", which is the goal..It is the difference between weekly sometimes more than once a week visits to monthly visits. Kids usually are completely back to "normal" when they hit maintenance!
Aria has been ANYTHING but normal for the last 4 weeks. The last 2 weeks of her treatment brought the biggest changes. She was so withdrawn and so sad that it was all I could do to look at her without crying. She didn't want to play with any toys. She basically stopped talking and interacting. Once in a while, she'd give us a glimpse of herself. A little reminder that she's still in there. It was reassuring but very very hard at the same time! The steroid she was taking was the culprit here. Often times, kids on this steroid become really agitated and irritable. Aria's response was very different. I'd say she was completely apathetic.
She's been off the steroid for 4 days now and the change is already quite amazing. Her withdrawl from life was very very hard emotionally and I kept trying to find a way to see the beauty of it. It is her process and her reality so something had to be beautiful. Just the other day I realized that her turning inward was a lot building a cocoon. She was spending a lot energy building this safe secure cocoon around herself where she could focus on healing. Now that she is off the steroid, it is as if she is slowly emerging from this cocoon. The butterfly that is my Aria is beginning to show us her wings once again and they are brilliant!
Your prayers, cards, letters, phone calls are all with me each and every single day! You just have no idea how I've been drawing from your strength and your commitment to me and my family. You are, each of you, so extraordinary and I'm so indebted. I thank you!!
Enclosed I have included an email I wrote to my family about how I felt the day I got the diagnosis of Aria's leukemia. I won't kid you, it is l-o-n-g!! Don't feel any obligation to read it, but if you're interested in my perspective here it is!..My love to each of you! ~julia
Since January 15th I've been in a place of profound reflection and introspection. I don't feel closed off to others in the least. I don't feel any sense of withdrawl from people that I've heard can happen in times of grief and sorrow. It is a strange thing to be dealt something that I often thought of in passing and always with a sense of fear, dread and inconceivability. "How do families deal with things like this?" "Oh my God, what would I do if ever one of the kids got horribly ill?" etc.etc.. We've all asked those questions and we still ask those question. I'm still asking those questions, "Oh my God, what if Reo gets really sick or breaks an arm or just happens to be walking outside and some space junk lands on his head and he dies....what would I do?" I know it's insane but I don't think I'm wrong in saying that most of us at some time or another have asked similar questions about those we love. The totally flat unhelpful response one hears all the time is, "you simply do not know what you would do." There is an element of truth there...but it is such a knee-jerk obvious response, it just pisses me off. Of course you don't know what you're going to do....we don't have the foggiest idea of what Life has in store for us. However, this idea masks the truth of the matter which is that no matter what Life deals, you will always, always, always tap into that "do-do-do" mode to simply survive. For me it was as simple as that.
Tuesday morning was like most other mornings. We got the kids ready for school and had a nice drive to school. Aria's shoulder was still very tender but I had convinced myself that she had some kind of inflammation and I'd probably have to go pick up some prescription. I had definitely entertained the possibility of something dreadful but I really couldn't visualize that so it was relatively easy to put out of my mind. It was around 10 30 am and I was heading back to school to pick them up. Rianna had fallen asleep in her carseat in the 2 miles it took from our driveway to the highway. I vividly remember turning onto the highway having a thought that it would be so much fun to contact the Spokane Fine Arts/Drama organization at one of the theatres and see if I could maybe spend some time in their costume department. That, and I thought about getting the kids involved in some kind of drama program too. It was all very sketchy and fantasy oriented but still very fun and amusing. It was 10 45 and Doc called my cell phone. Nothing odd there. I thought maybe he wondered if I had heard anything from the Doctor about her lab results that were drawn the day before. I also thought he was calling to tell me how fabulous I am and so forth! This is the gist of that conversation.
"Hi hon, what's up?"
"Are you driving? On your way to pick up the kids?"
"Yeah, I'm about 10 minutes away."
"Good, I'm going to meet you at home and then we have a 1 o'clock appointment for Aria."
At this point my stomach has literally jumped out of my body and what has replaced it is a soaking wet wad of a beach towel about to be wrung beyond recognition. In addition, I felt all the blood drain from my head and begin flowing around the beach towel that is now my stomach.
"Doc? (pause) Is everything alright?"
"Uh, no it isn't. Are you driving? Are you close to the school? Ar..
"Doc, what is it?" I'm gripping the steering wheel. I notice that my knuckles are white.
"Julie, they think Aria has leukemia."
"Leukemia?"
"Yes."
I can't speak but inside my head I'm screaming all kinds of obscenities I'll spare you here.
"Julie, I need you to hold it together for the kids. I need you to pick them up and talk to them about what we're going to do. I need you to prepare them that we may have to be admitted in the hospital."
"sh**, the hospital?"
"Yes."
"Doc, this is bad..this is really, really, bad."
"Yes it is....we're going to get through this..."
I'm taking deep breaths now. I've parked outside the school and the kids haven't come out yet.
"OK, I can do this Doc. I'm up for it. I'm on board..I'm there. I'm strong." (I'm totally trying to convince myself) Right now my beach towel stomach is beginning to be wrung. You know what that looks and feels like don't you? Two people are holding an end of a sopping wet towel and you begin to twist the towel in opposite directions. At first the amount of water that pours out is always impressive! That was my stomach and my bladder was in on the conspiracy too! No worries..no puddles to clean up just an overwhelming sense of urgency!
"I'll meet you at home. We need to pack a suitcase for the hospital, snacks and so forth."
"Got it. I love you Doc."
"I love you too, see you soon!"
Click.
Wring...wring...shhhplash...ssssplush!!
But now the most amazing transformation occurs. My do-do-do button has been activated and suddenly I have all kinds of things to do. I have a check list in my head which is trying to suppress the voice that is saying nothing but "leukemia! leukemia! cancer! cancer! chemo! chemo! leukemia! leukemia!"
I can see the kids coming out of school now and it is taking every ounce of strength I can conjure not to be in tears. Aria has no idea what she's about to deal with. I don't either for that matter and I'm completely losing it but keeping it all together at the same time. The kids are great! Aria is feeling better and shows me that she has full range of motion in her shoulders. Reo can't wait to show me everything he made in school. Aria jumps in the act too and shows me all her treasures. I take a moment and notice every single detail. I am deliberately trying to be gentle in my movements, my words and my tone. My stress hormones are kicking in and I'm sweating and my towel stomach is wringing itself again.wwwwrrrrrriiiiiinnnnnnnngggg! I'm convinced I'm going to vomit so I start breathing. I put the kids in their seatbelts. They are so innocent, so pure, so sweet, so blissfully unaware. I am completely devastated and don't know what to say. Tears well in my eyes and I let them. I sit in my seat, take a deep deep breath, allowing my tears to spill over and begin heading for home..toward our new life. I tell the kids at this point, "Hey guys, I'm feeling really sad right now so don't be scared if you see Mama cry. I'm feeling sad because, Aria, you are really sick and we need to take you to a special doctor to help us make you feel better. So we're heading home and we're gonna meet Dada there and then we get to go to the hospital and meet a bunch of new friends and doctors to help us understand why your shoulders hurt." They are completely silent. They are processing this news too. They are, without a shadow of a doubt, sensing my emotion, my fear and my sorrow. I don't protect them from this. I let it be what it is. I made a silent vow to be completely honest about everything with the kids and most importantly with myself.
The drive home was long but my check list was clicking away. When I arrived home, Doc wasn't there yet, so I decided to make everything as "normal" as possible. I made lunch for the kids.. I went through their backpacks and so on. Doc arrived a few minutes later. We hugged and breathed and exchanged a look that transcended words. We went at it; divide and conquer mode. Check, check, check went the list and suddenly it was time to go. We found ourselves at the pediatric oncology clinic checking in. At this point my towel stomach was once again wringing itself uncontrollably. I couldn't believe my eyes. I noticed that my feet were firmly on the ground and I was taking in every single detail of the waiting area but nothing made any sense. I kept hearing myself say, "We only might have to be in the hospital. They only suspect she has leukemia. It still could be something else. We're here to check it all out." We go to a very fun play room and there are a few kids playing waiting for their treatments. I'm very aware that I must look like a deer in headlights. I have this smile on my face that I'm aware of that is trying to send a reassuring message; Don't worry, I am not going to puke! I will not puke!" to everyone around me. wwwrrrrriiiiiiiiiinnnnggggg goes my stomach towel.
Nurses show up and Aria is already checked in. I'm feeling suspicious. They know something I don't know. wwrrrrrrrrrrrinnnnnnnnnng. I need to sit down. I can't even tell you what they did, if they did anything like draw blood. I honestly have no idea. What I remember VERY clearly though is the hospital bracelet a nurse puts on her arm. We have not met a doctor yet who has looked me in the eye and said, "Julia, your daughter has leukemia and has to be in the hospital!" I ask her if this is standard protocol for the clinic and the nurse looks a little baffled but she is incredibly gentle in everything she says and does. "I'm sorry," she begins, "but I'm pretty certain you all are being admitted. Wasn't that your understanding?" wrrrrrrrrrrriiiiiiiiinnnnnnngggggggg Doc tells her that we understood that it was a possibility but it hadn't been decided. She smiled nodded her head and told us that indeed we are being admitted. They do know something we don't know! I'm aware that I'm feeling completely insecure. We are led to an examination room where we wait. Aria is limp and tired. She is sensing the anxiety. Reo is totally amusing himself with some pencils. Rianna is nursing. Our oncology doctor comes in with another woman and begins to tell us what they know and understand. They indeed suspect Aria has leukemia and this what we know about leukemia, etc. etc...wrrrrrrrriiiiiiiiiinnnnnng.. I'm aware that I'm standing and wandering around like a caged lion. For some reason I find this hilarious and in my head I'm laughing hysterically. It is so weird. I'm up and down and up and down. Doc, meanwhile is steady...completely calm and holding Aria. He is all about numbers and data and I feel completely reassured by his presence. It is very much like being freezing cold and suddenly having someone wrap a heated blanket around you. We had a long, long conversation with Dr. Angela..At least it felt long. She was incredible. She answered every single question as if it had been the first time someone had asked it. She was positive and so hopeful and at the same time extremely honest and forthcoming. There were no illusions to what she made certain we understood. I was so grateful for her. The news that we would likely be in the hospital for 2 weeks or more, wrrrrrrrrrrrrrrriiiiiiiiiiinnnnnnnnnggggggg...was like falling down. It really was. Consider the last time you fell down, tripped over something and fell and landed hard. It is the most slow-motion uncontrollable series of events that leaves, me anyway, breathless, confused, in pain and often humiliated. This news spared me the humiliartion but I literally felt like I had fallen down and hurt myself. When she told us this she was beginning to tell us other things when I cut her off. She was so gracious to allow me to interrupt her..so gentle.. I told her that I needed a moment to wrap my head around 2 weeks living in the hospital...2 other kids, a farm, animals, school, my life, my hobbies etc.etc...She breathed deeply nodding but saying nothing. She didn't have to. Then she told us about the treatment plan more or less and once again I fell down into the reality of 2 to 3 YEARS of treatment. wrrrrrrrrriiiiiiiiinnnnnnnnnnnggggggg.. At this point, I am thinking of almost nothing but how badly my stomach hurts and how sick I feel and how completely depleted of any fluid that once existed in my body. My towel stomach has been wrung dry but is now tying itself in huge knots. We process more information and then Aria is examined.
At some point during our conversation I ask our doctor point blank, "based on your experience and what Aria presents with are you pretty certain that she has leukemia?" "Yes." was her response and she looked me straight in the eye. I loved her immediately. I trusted her completely. My suspicion vanished and I took comfort in knowing that they knew before we arrived what our future held and they knew how to hold our hands, open the door and lead us to the other side. The other Julia couldn't believe this was happening. This new Julia was grounded and ready to make preparations and to surrender in some ways. For the next several hours the 2 Julia's were facing each other with a myriad of emotion and thought. We were led to our hospital room where Aria was checked in again. I was so aware of everyone's face and their smiles and their softness and tenderness. It was a frightening experience in a very loving secure place. I was also very aware that I was hanging on to every single word anyone said to me. Peoples' voices were clear and what they said rang and rang in my head. When someone said, "we'll be hooking Aria up to some IVs", I was ready and was taken back when that reality didn't actually happen for hours later. The old Julia was quiet and observant. The new Julia was asking questions and trying with every ounce of my being to be considerate, articulate and equally gentle. Everyone and I mean everyone behaved as if they were a masseuse for my psyche.
We settled into our room and I was hoping my stomach would settle. No such luck. My head ached and I was beyond tired. I was so exhausted and emotionally drained that I could no longer concentrate. It was fast approaching 8pm and it was time for Reo and Rianna to go to bed. We decided that I would take the kids home and Doc would stay in the hospital. That was the plan for at least this night. I remember driving home telling myself to stay awake and telling my stomach that it could settle itself. I was so tired I couldn't cry even though I wanted to. I brought the kids inside and got them ready for bed as we always do, except without Aria, which felt so, so horrible. I asked Reo to stay with me in the Big Bed, which he did and we all went to sleep. I remember thinking as I turned out the light, " So long old Julia....this new Julia has something else to do." With that, I visualized taking my knotted dry beach towel stomach out to the clothesline. I hung it up and let it wave away all I knew before and at the same time act as a flag to signal the beginning of a new journey....
~j
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
| 16 L A T E S T R E P L I E S (Newest First) |
| cajungal |
Posted - Feb 19 2008 : 7:13:40 PM
Julia, y'all are incredible. Your telling of your story is almost script-like......it was as though the movie of your experience was playing in my mind......We continue to pray.
Blessings
Catherine
One of the best compliments from one of my daughters: "Moma, you smell good...like dirt." |
| junkjunkie |
Posted - Feb 19 2008 : 4:00:59 PM
Julia, Your strength is incredible...it's amazing how strong we can be when faced with a difficult situation. Your writings really moved me and show how incredibly lucky Aria is to have you on her side, fighting with her. It's easy to see that she draws her strength through you and your family. Many ((((hugs))) and prayers to Aria and her lovely family.
"To have life in focus, we must have death in our field of vision." Benedictine monk John Main |
| Tammy Claxton |
Posted - Feb 19 2008 : 08:23:31 AM
Julia, I really have no words to express how I feel right now. I can tell you that I admire your strength and courage as you go through this with your daughter. I am keeping that flame lit for Aria and I know that all of our farmgirl prayers and the love that is being sent your way will help Aria overcome this this terrible disease. Please know you and your family are in my thoughts.
"A friend is someone who does things that count, but never stops to count them"
http://countryintheburbs.blogspot.com/ |
| CountryBorn |
Posted - Feb 19 2008 : 07:29:29 AM
Julia,I have never seen such an honest and touching explanation of grief and sorrow. I am praying so much for Aria and you and your family. Sweet Julia, believe, she has every chance in the world to recover. She is here with you and there is so much hope and reasons for her to be fine. My heart and my prayers are with you, thank you so much for sharing this with all of 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 |
| mima |
Posted - Feb 19 2008 : 06:54:38 AM
Julia!!
That was sooo beautiful and honest! I'm soo glad you shared it with us! You know your sisters here are all with you and love to share the load with you!! I adored my chat on the phone with you yesterday!! You are an amzing strong beautiful woman and i'm so honored to be your friend!! Remember how I said Maryjane and Gandhi were my idols??? Well, add yourself to my new guru list!!! Love you sweetie! Have a really good days ! Love and hugs to all!
"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 |
| Nance in France |
Posted - Feb 19 2008 : 02:50:24 AM
Julia, your strength that you have discovered, and the strength that you and your husband generate together will see you all through this journey. I say a special prayer for Aria each night. God bless you all. Nance |
| JudyBlueEyes |
Posted - Feb 18 2008 : 8:32:14 PM
(((((Julia, Aria, Doc & Family))))) We love you, FarmGirl! Judy
We come from the earth, we go back to the earth, and in between, we garden! |
| Luzy |
Posted - Feb 18 2008 : 8:15:15 PM
I'm praying for you all...I'll e mail you. Love and hugs, Lu
--
May I always be the kind of person my dog thinks I am.
http://luzy.etsy.com- My etsy store! |
| babysmama |
Posted - Feb 18 2008 : 4:45:59 PM
Julia-
I hope that you will consider keeping all your writing and even journaling about Aria's journey. The reason I say this is in the future, if you choose to write about this I think a book would do wonders for other parents in your situation, and if not, maybe Aria would like to have all the writings.
My mother is in the finished works of a book about being a caregiver to a spouse with cancer (my dad went through cancer treatments in 2006) and though there are all types of books out there about cancer there were very few from the caregivers view. My dad wanted nothing to do with reading books about cancer but now is glad that my mother put his story into words and enjoyed reading it, especially since a lot of it he doesn't remember since he was a bit out of it for a week or so after surgery and too tired to remember anything through chemo and radiation. I think once her book is published it will help other spouses/caregivers know what to maybe expect and see that certain things are "normal".
Either way though, writing is a great outlet. So glad Aria is through with phase one. She continues to be in our prayers. Please e-mail me (or someone else can) with your address, my four year old daughter and I still want to get that box out to her.
-Elizabeth |
| Annika |
Posted - Feb 18 2008 : 4:18:28 PM
Julia, you are an amazing woman with an amazing family on a terrible rough journey. I am so proud of all of you. You have my daily thought and prayers. I am so glad that you are all there for each other. Thinking of all of you and sending big warm hugs
Annika
Farmgirl sister #13
Mud Hen Queen
http://innermountainmudhens.wordpress.com/
http://panzymoon.wordpress.com/
http://panzymoonsgarden.blogspot.com/ |
| jpbluesky |
Posted - Feb 18 2008 : 4:03:17 PM
Julia - thank you for being so open with us. I pray for your continued strength and courage. I know you all will make it through this. I just wish it could be tomorrow!
Jeannie
Farmgirl Sister # 31
Psalm 51: 10-13 |
| Firemama |
Posted - Feb 18 2008 : 3:11:41 PM
Julia once again your strength amazes me. I am still praying for all of you.
Mama to 2
FarmGirl# 20
Rich or Poor, It Dont matter We're all the same everybodys hungry in a different way....
http://myfarmdreams.blogspot.com/
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| CabinCreek-Kentucky |
Posted - Feb 18 2008 : 2:31:09 PM
julia .. you write with such honesty and clarity .. we are all tagging along with you on your journey .. lean on us for strength from time to time when the need arises! we love you and little aria. xo, frannie
True Friends * Frannie
HEAR MY STORIES
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| PlumCreekMama |
Posted - Feb 18 2008 : 2:29:44 PM
Julia- I can't think of the right words to express what I am feeling. The tears pour out of my eyes as I read your post, knowing how you feel and knowing what your family feels. I wish no one had to go through this. It would be hard to imagine anything of beauty in it. I hope and pray for Aria and you and your family. |
| willowtreecreek |
Posted - Feb 18 2008 : 2:19:28 PM
julia thank you so much for sharing this very personal information with us. I am so glad to hear that you are through phase 1. You are such a strong woman and an wonderful role modle to you little girl. You continue to be in my prayers daily. Love and hugs to your whole family.
Farmgirl Sister #17
Blog
www.willowtreecreek.wordpress.com
Felt and Fabric Crafts
www.willowartist.etsy.com
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| Peanut |
Posted - Feb 18 2008 : 12:44:00 PM
Julia, I read all of it and it was beautiful. Your post was so very honest and touching.
I think of Aria every day. I have two little girls (4 and 6). Thank you for the update.
"What is a farm but a mute gospel?"
Ralph Waldo Emerson |
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