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Family Matters:  Aria is DONE with the really INTENSE stuff!  |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
 Posted - Jul 06 2008 : 08:43:41 AM
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Farmgirls, all your thoughts, prayers and wishes are keeping us up and moving forward. It has been an incredible 5 1/2 months! Aria has completed phase 4 of her treatment plan and now we head into phase 5 called "Maintenance." I've written a long email to a bunch of family and friends and have included it here for you to read if you're interested. It is a long update....I've written using a lot of imagery to describe the journey so far. This experience has seen me travel through dark caves, ghostly forests and a climb to a summit of sorts. It has never felt like a mountain so the summit has never been a really scary dangerous kind of thing. Instead, I've discovered that is it a flat top mound with a brilliant view. It is where I am now as I write. I tell you this so that you understand the background of some of the images use in the email below. I can't thank you enough for your constant reminders that you're still with me. It means so very very much. Many thanks sent out to you from us....love and joy to each and every one of you! Julia Hayes
Aria has completed Delayed Intensification! She has dominated this
> phase of treatment like nothing I could ever have imagined. I am so
> grateful that her body has responded so well, enabling her to enjoy
> these magnificent summer days without any of the crippling side-
> effects for which we were told to prepare. We have another few days
> of sinking counts and then time for recovery before starting the 5th
> and Final phase called "Maintenance." It is so exciting to be here on
> this mound with a 360 degree view. I can clearly see where I was,
> where I am now and where I have to go. I am full and in a peaceful
> moment. This pause is perfect in every way.
>
> Thursday July 3, 2008 Aria went to clinic for a follow-up on her
> counts. We were specifically wondering what her ANC was going to be
> as well as if her hematocrit was holding steady. It would not be out
> of the ordinary to require another blood transfusion at this stage of
> the game, which is something I didn't consider. Aria tolerated a
> simple finger poke and we scurried home to play and wait for the
> preliminary results. I decided not to wait around the clinic for a
> number of reasons. The most important was that I was alone with Reo,
> Aria and Rianna. I don't find waiting in the clinic playroom with 3
> kids, who have very different needs, a real picnic. This, on top of
> the fact, that if Aria needed a blood transfusion, we'd have to wait
> around for the blood to be ordered which takes at least an hour and
> then stick around a hospital room for another 3 hours for the actual
> transfusion to occur. UGH!! The idea of hanging around was becoming
> more and more dismal. I asserted myself and told Dr. Judy, that we'd
> be home and they could call us and let us know what to do. For a
> moment, I thought I read Dr. Judy's and the nurse's response to my
> decision as cool and mildly disapproving. I instantly felt a little
> insecure and began to question my decision. Not only that, but I felt
> myself getting defensive. It was so strange to be standing in front
> of Dr. Judy, who truly has only our best interests in mind, feeling
> defensive about wanting to go home and not wanting to hang around the
> hospital. What she said in response to my decision was, "that's
> fine." but her manner wasn't fully convincing or at least through the
> eyes of my insecurity, her response wasn't completely comforting. I'm
> thankful that it didn't take much time for me to realize the
> ridiculousness of the emotional upheaval I was about to invite to
> take charge of my senses. I went from being confident in a decision I
> made, to feeling insecure and looking for approval from others about
> my decision to being defensive about not getting exactly what I
> wanted. Herein is where the truth exists. I'm learning that to seek
> approval from others no matter what the circumstance, rarely if ever,
> yields the outcome I so desire. This situation was such an incredible
> moment of learning for me. Dr. Judy's response, "that's fine" rang in
> my insecure head as something else. What that something else was
> exactly, I can't say but it didn't resonate with her words. When I
> take myself out of the equation entirely, I'm left with Dr. Judy's
> words, "that's fine." I have to ask myself, then, what did I hear or
> read into what she was saying? An even more interesting question is,
> "what did I want to hear?" You may find this process over-the top as
> if I'm reading into every minute detail of this interaction. You may
> be wondering if I dissect every interaction this way. I don't. This
> one, for some reason, struck a cord, hit nerve, and became an obvious
> teacher I couldn't ignore. Mind you, this process, this lesson,
> lasted only a few moments. What precious gifts they were.
>
> I left clinic a little while later rummaging through some remaining
> thoughts and the more I thought about it, the more I realized I had
> made the right decision and Dr. Judy's response was indeed sincere.
> It was then that I realized that I thought we were going to clinic
> for a only finger poke and a count check and a possible blood
> transfusion never registered on my radar. Maybe it should have been
> in the back of my mind somewhere, but it wasn't. In truth, it never
> occurred to me that it was a possibility so I left the house
> completely unprepared to spend a day in the hospital. I didn't pack a
> change of clothes for Rianna. There were no extra diapers, wipes,
> snacks, drinks, movies, books, activities. Nothing. I was heading to
> the hospital to spend 30 minutes for a quick and simple blood draw. I
> suppose I should berate myself a little for not being more prepared
> all of the time. You know, 'prepare for the unexpected' sort of
> mentality. I don't operate this way. I'm beginning to realize that a
> lot of what motivates that kind of preparation is once again the
> illusion of control. It's as if I can trick my mind into thinking,
> "See? You don't have to feel completely off-kilter about this (insert
> whatever). You're prepared with snacks and drinks and diapers and
> toys. Don't you feel better? Don't you feel in control of the
> situation?" I'm certain I'd feel comforted by my organization and my
> ability to be prepared for 'anything' but I certainly wouldn't be in
> control. If I've learned one thing throughout this experience, no
> matter how I play out scenarios, trying to imagine what they're going
> to be like, they're rarely anything like what I imagine. I know we
> all know this intellectually, but it is my contention that our
> emotional insecurities are what take precedence in these matters. I'm
> learning how to sit comfortably with those unstable emotions knowing
> full well that there is nothing I can 'do' to persuade them to be
> anything but what they are. I'm learning that to be with them and to
> understand enables me to better cope with what I can't control and to
> truly control what little I can. I'm learning that most of the time,
> my emotions, and reactions are mine alone and have so little do with
> others.
>
> As I write this out, it becomes clearer that my insecure cycle with
> Dr. Judy makes perfect sense. She threw me a curve ball suggesting
> Aria may need to stick around for a blood transfusion, something I
> never considered. I was unprepared for that news and for being in the
> hospital environment for that length of time. We would have made it
> work if we had to but fortunately, we weren't under any forced
> condition. I could assert my instincts and make a decision that was
> best for me and for the kids. Control is a tricky business. I'm
> learning how to navigate it with a steadier hand.
>
> We came home and played inside for a while so I could wait for the
> phone and get the preliminary results. Within an hour, I received a
> phone call from the clinic. Aria didn't need a blood transfusion
> afterall. Her platelets were low but still ok. Her ANC, on the other
> hand, took a hearty nose dive to 120! I had this image come to my
> mind that made me laugh. I saw millions of itty bitty blood cells
> diving off a bridge attached to bungee cords. Aria's ANC taking a
> flying leap is expected and may even decrease a little more, but in
> no time, her counts ought to start bumping back up. Blood
> counts...boing....boing...boing! I was told to be on the look out for
> fevers, easy bruising and nose bleeds. The low platelets would
> account for the latter 2 issues. I tried to take it all in stride as
> if this was all perfectly normal news. Fevers. Bruising. Nose Bleeds.
> Yep, just the every day run of the mill kind of stuff. You know what?
> It is so weird to think that these things are what are normal for us
> now and they freak me out! If Aria suddenly has a nose bleed, it is
> going to take an oscar winning performance on my part not to act out
> how panicky I'm sure I'll feel. I know I'll appear calm and collected
> but I also know that it will be all I can do not to throw-up. The
> sight of blood makes me queasy. Plain and simple, I get woozy-goozy
> on my feet. I sincerely doubt anything will come to pass. I know they
> have to tell me to prepare me in case something funky like that
> happens but still it is a peculiar bit of reality for us. "Go ahead
> and relax but be on the look out for....." is what I hear ring in my
> head.
>
> Looking at Aria, one would never know she was so immuno-suppressed. I
> was thrilled that she didn't need to be transfused and I was also
> happy that her body was behaving in a completely predictable manner.
> It was encouraging news. We spent the rest of the day in the pool. In
> fact Aria spent more than 2 1/2 hours in the pool. By the time she
> got out, she was so wiped that she fell asleep on a lounge chair
> within a matter of minutes. We had a wonderful day.
>
> Aria continues to do very well as we face this next phase of
> treatment. We are not scheduled to go back to the clinic until July
> 21, 2008, which is a full 18 days off. We've never had this much time
> off and I frankly don't know what to do with myself! We can't go
> anywhere and do much of anything in public with Aria's counts being
> so low, but we sure can party on the farm, which is what we intend to
> do! On Monday July 21st, Aria will have another blood draw and count
> check. If her counts are at the target level, which I think is 1500,
> then we'll return to clinic the following day for her to have a
> spinal tap with methotrexate and we begin the long journey of
> Maintenance. This phase is roughly 20 months long. I'll give you a
> moment to digest that. I'm still digesting that idea. She'll be
> taking 4 different chemo medications a month; the steroid for 5 days
> monthly, methotrexate orally once a week, vincristine once a month
> and then the 6MP drug daily. That med is the one that caused her to
> be sick every day so we'll be watching the dosing very carefully. I'm
> told that the first year of maintenance is all about finding "the
> magic number". In other words, it takes a great deal of time to
> figure out how the body is going to react with certain doses of
> certain drugs over a long period of time. It takes time for the body
> to react and then stabilize and react again. It strikes me as still a
> very intense bit of treatment and it is constant but at least it
> never changes in terms of what medications she's receiving and
> therefore her side-effects ought not to fluctuate much. Her counts
> are also to remain relatively high so her risks for infection
> decrease. She's still at greater risk than most people but certainly
> able to do more things. Furthermore, she'll need less monitoring over
> time. My guess is that for the first few months we'll be going to
> clinic every week or 2 eventually graduating to once a month. She'll
> also receive spinal taps every 3 months with methotrexate. Everyone
> comments that maintenance is such a relief.."It is so much better!"
> is something I hear all the time. I look at her schedule of
> medication and think, "Geez, this looks like a lot!" I'm not in the
> phase yet so I don't know but I trust what others are telling me.
>
> I think it can be said, that we've made it through the roughest part
> and Aria has done extraordinarily well. As I've been sitting here
> typing, I've imagine myself slowly turning on the mound upon which I
> stand. I'll be here for the next few weeks looking around, taking in
> sights and thoughts. On July 21, 2008, I'll take my first step on our
> long road toward the light of cure. My load will be lighter. I've
> discovered that I don't need much. I'm looking around quietly and
> calmly. I'm confident. I'm at ease. I'm filled with laughter that I'm
> not sure is my own. I'm also hearing a cheering voice telling me,
> "You are who you are. Stand as yourself and know you are fine." and
> so I do and so I am. ~j
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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catscharm74
True Blue Farmgirl
4687 Posts
Heather
Texas
USA
4687 Posts |
Posted - Jul 06 2008 : 08:50:54 AM
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Julia- I am so glad to hear everything is coming out for the better. I will keep you, Aria and yours in my prayers and thoughts. (((HUGS)))
Heather
Yee-Haw, I am a cowgirl!!!
FARMGIRL #90 |
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Mountain Girl
True Blue Farmgirl
806 Posts
JoAnn
Colville
Washington
USA
806 Posts |
Posted - Jul 06 2008 : 09:06:43 AM
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| Happy for you all. Enjoy the view! JoAnn |
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jpbluesky
True Blue Farmgirl
6066 Posts
Jeannie
Florida
USA
6066 Posts |
Posted - Jul 06 2008 : 09:22:16 AM
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You may not feel it in a day to day routine, but your writing shows how incredibly strong and knowledgable you have become. You are doing everything that can be done for Aria, and I felt proud of you while reading of your time on the plateau. Hugs and prayers to you.
Farmgirl Sister # 31
www.blueskyjeannie.blogspot.com
Psalm 51: 10-13 |
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graciegreeneyes
True Blue Farmgirl
3107 Posts
Amy Grace
Rosalia
WA
USA
3107 Posts |
Posted - Jul 06 2008 : 10:31:21 AM
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Julia - Aria is incredibly lucky to have a mom who can go through this experience as you have; looking at it as a journey, a difficult one, but a learning experience none the less. I have had you in my thoughts many times and you will continue to be there
Amy Grace
Farmgirl #224
"use it up, wear it out, make it do, or do without" |
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Tina Michelle
True Blue Farmgirl
6948 Posts
Tina
sunshine state
FL
USA
6948 Posts |
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willowtreecreek
True Blue Farmgirl
4813 Posts
Julie
Russell
AR
USA
4813 Posts |
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Alee
True Blue Farmgirl
22941 Posts
Alee
Worland
Wy
USA
22941 Posts |
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aimeeravae
True Blue Farmgirl
341 Posts
Aimee
Deer River
MN
USA
341 Posts |
Posted - Jul 06 2008 : 3:56:16 PM
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So glad to hear it! i am going to keep sending feel goods you way to keep it up!
Aimee
http://laplantewardklopf.blogspot.com/ Motto To Live By
"Life should NOT be a jouney to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, latte in the other, body thoroughly used up, totally worn out and screaming "WOO HOO, what a ride!" |
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ruralfarmgirl
True Blue Farmgirl
4309 Posts
Rene'
Prosser
WA
USA
4309 Posts |
Posted - Jul 06 2008 : 5:36:40 PM
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Such Great news.. it is so amazing how "strong" little ones are, isnt it.. and how much we can actually go through...........I couldnt be more thrilled, thanks for sharing the GREAT NEWS!
Rene~Prosser Farmgirl #185
" Plant goodness, harvest the fruit of loyalty, plow the new ground of knowledge. Hosea 10:12 |
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Miss Bee Haven
True Blue Farmgirl
4331 Posts
Janice
Louisville/Irvington
Kentucky
USA
4331 Posts |
Posted - Jul 07 2008 : 06:30:10 AM
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As Aria gains strength, you have gained wisdom. Congratulations to you both on your journey together.
Farmgirl Sister #50
"If you think you've got it nailed down, then what's all that around it?"
'Br.Dave Gardner' |
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Annika
True Blue Farmgirl
5602 Posts
Annika
USA
5602 Posts |
Posted - Jul 07 2008 : 07:13:24 AM
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This is great news and so very welcome to hear. I am thrilled to hear that she is doing so well and so are you.
Blessings and joy to you and your family. Congratulations to Miss Aria for being such a warrior and for you too Julia!
*Hugs*
Annika |
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ruralfarmgirl
True Blue Farmgirl
4309 Posts
Rene'
Prosser
WA
USA
4309 Posts |
Posted - Jul 07 2008 : 07:56:46 AM
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Julia,
I read your posts again this morning. I have been reading a friends book called "when Goliath doesnt fall". I love how you describe standing on the mound, looking around looking at the journey ( how far you have come and the path ahead)...I heard someone rather recently describe "fear" as, not being afraid of the "monster" as much as being un-sure if we can deal with it.....yet here you are Aria are.. Standing on the Mound.. having looked the monster in the eyes, staked your territory, chosen your rocks, loaded the old sling shot.. and he is about to hit the ground.... that is something to be proud of..............I use to have a little sticker on my fridge that said something along the lines of "God must have a much higher opinion of me then I do as he says he wont give us more then we can handle"... but I am always amazed at how HE knows us so well and somehow we come out of these things proving that we are much stronger then we ever, ever, ever could have dreamed before........ I for one.. am cheering from the side lines and cannot wait for the day when this Goliath Falls, for good.....
Rene~Prosser Farmgirl #185
" Plant goodness, harvest the fruit of loyalty, plow the new ground of knowledge. Hosea 10:12 |
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Jul 07 2008 : 09:46:42 AM
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Rene, your post touched very deeply and I thank you so very much for it. Fear is a formidable foe indeed. I went to a funeral of a little boy I knew from the oncology clinic. He'd been dealing with cancer for 5 of his 10 short years. His original prognosis was very much the same as Aria's but his cancer became something else and finally took his life. It was an incredibly sad and profound experience for me and was I utterly compelled to attend his wake and funeral. It was a very selfish thing to do in many respects because I needed to know the experience so that I would feel less afraid. Aria dying is hands down my greatest fear...it is completely out of my control, however, and it also something that she will inevitably do. I just hope that she doesn't have to go before living a full long life. It is a paralyzing fear sometimes and I have to face it over and over again.
I have been doing a great deal of spiritual searching as many people do when faced with tragedy and life threatening illness. My view of God has changed dramatically. I no longer see God as a separate entity that makes decisions that effect us one way or another. Instead I see God now as an umbilical cord of sorts..connecting us to each other. It is the flow of Spirit through that cord of Love (God) that empowers us, fills us with grace and endurance and keeps us united in LIfe and living. The idea that God doesn't give us more than we can handle is a good one but only half described. God doesn't give us more than we can handle because we are connected to so many brilliant souls willing to help.
Thank you for your dose of Spirit through the umbilical cord that connects you to me and me to you! My love and laughter, ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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Tammy Claxton
True Blue Farmgirl
1559 Posts
Tammy
Glen Burnie
Maryland
USA
1559 Posts |
Posted - Jul 07 2008 : 12:18:32 PM
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It's so nice to read that Aria is doing well! All my love and healing prayers are still be sent your way! Blessings and farmgirl hugs!
Crafty Bay Farmgirl Chapter
"What doesn't kill you will only make you stronger"
Farmgirl #152
http://countryintheburbs.blogspot.com/ |
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ruralfarmgirl
True Blue Farmgirl
4309 Posts
Rene'
Prosser
WA
USA
4309 Posts |
Posted - Jul 07 2008 : 4:36:18 PM
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Julia,
I cannot even begin to image the kind of fear of loosing a child would be life.. my heart refuses to go there...I so know what you mean by how God doesnt give us more then we can handle without supplying people to help us through it. My mom died when I was 8...I became a ward of the state and was then adopted. I can look back today and see the women that came into my life and are still here today.. all of them mothering me in some way or another... It is my feverent prayer for Aria.. that at 45 ( my age) she can sit for a moment and look back and see how in a dark moment of her life, strong women rallied around standing in the gap.. and like me, she can say, they saw me through childhood, teen years, marriage, children, failures and successes... and life is somehow more rich fore them being there.....blessings to the both of you...
Rene~Prosser Farmgirl #185
" Plant goodness, harvest the fruit of loyalty, plow the new ground of knowledge. Hosea 10:12 |
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CabinCreek-Kentucky
True Blue Farmgirl
8529 Posts
Frannie
Green County
Kentucky
USA
8529 Posts |
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CabinCreek-Kentucky
True Blue Farmgirl
8529 Posts
Frannie
Green County
Kentucky
USA
8529 Posts |
Posted - Jul 07 2008 : 10:30:06 PM
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Julia .. i heard this last night and thought of you and your family and especially sweet little ARIA:
"It is in the quiet crucibel of your personal private sufferings
that your noblest dreams are born
and God's greatest gifts are given
in compensation for what you have been through".
True Friends * Frannie
adopt a 'rag-chile'
http://sistermercysfoundlinhome.blogspot.com
treasures .. new and olde .. http://mudpiemanormercantile.blogspot.com
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julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Jul 08 2008 : 08:08:46 AM
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Frannie, I can't thank you enough for sharing that with me. Do you know who said it? I think I may have to stitch it somewhere. I've been told many things by many people and some has resonated and some has not. This has resonated very deeply with me and I don't think I've ever heard anything quite like it. This is how I've started my day....you on my shoulder whispering these lovely words. Peace and blessings to you always, ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com |
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CountryBorn
True Blue Farmgirl
1545 Posts
Mary Jane
New York
USA
1545 Posts |
Posted - Jul 08 2008 : 7:02:13 PM
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Julia, I am so happy to hear that Aria is doing well. I pray for her you and all your family. I firmly believe that God does not cause these horrible things to happen to his sweet children. I believe he is there to help and guide us through this times, to give us strength courage and hope.I pray with all my heart the outcome of this trial in your lives will be total healing for Aria.
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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Family Matters: Aria is DONE with the really INTENSE stuff! |
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Aria is DONE with the really INTENSE stuff!
