| Author |
Family Matters:  Aria Summer Update  |
|
|
julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
 Posted - Aug 03 2009 : 4:24:11 PM
|
Just wanted to let you know that Aria continues to do well.
She got her cast off nearly 2 weeks ago after having one on for 12 weeks to the day! She is now running like a freebird!
A few days after farm fair, we flew to Georgia to celebrate my parents' 50th wedding anniversary. It was the first time in nearly 2 years that we left the farm for any kind of enjoyable over-nighter. It was so wonderful. It was hard traveling with my 2 year old, not because she is wild or hard to entertain, but because traveling is just plain tiring. That, and the stress of worrying about anyone sneezing or coughing anywhere near Aria was hard. But we made it and it was a wonderful time. I won't kid you though, I was worried!
We came home and I got hit with a virus that forced me to my knees! I hadn't been sick like that in a decade. I'm sure the stress of traveling and the stress of the past 18 months finally caught up with me. On top of that, I was naturally horrified thinking that Aria was being exposed. Fortunately, she never got it. She had a small pesky cough but nothing unusual at all.
We've been enjoying our swimming pool every single day and Aria is quite the swimmer now. She is jumping off the diving board and swimming in the deep end like a pro. She is just amazing. It was finally feeling like things were getting back to 'normal' and Aria could enjoy being a bonafide kid again.
But we live with cancer and that means life isn't normal. So, last week Thursday, out of the blue, she started complaining that her ear hurt. In fact she was screaming, which immediately brought back those horrible memories of when she was first diagnosed and her shoulders were exquisitely painful. It was awful. I called the clinic to find out if we could just come in and had to leave a message. After an hour, no one called me back so I decided to just take her to the ER.
It was awesome that no one was in the ER Thursday morning! Aria was whimpering and a real mess. The ER doctor told me that she had swimmer's ear and gave us some drops to use for the next week to 10 days. I was relieved that it was a simple kid kind of thing. As we were getting ready to leave he mentioned, "Julia, this kind of infection is actually a really nasty bacteria and with our oncology kids we have to be extra careful. So, just watch her closely and if she spikes a fever bring her back right away." Sigh. Ok, so what I thought was a simple kid thing for Aria isn't. 
We got home and she felt MUCH better. Friday rolled around and she was terrific. In the morning she told me that her ear didn't hurt and all day long we played and swam in the pool. She didn't put her head under and enjoyed floating around on an inner-tube. It was wonderful. Around 6pm or so we decided to head back into the pool, since the house hot. It was hot hot hot anyway. We played and played and played. It was great and I was remarking to my friends how great she looked. Aria came inside to dry off and within a minute was lying on the couch with a blanket tucked around her saying, "I'm just tired." Well, this wasn't right. Just a minute ago she was bouncing around in the pool with all the energy in the world and now she's acting as if she's cold and tired.
I took her temperature and it was 100.5, which is a trip to the ER. So, I was packing up and getting ready. About 5 minutes later, I took it again (100.9). I packed even faster. My husband came racing in from outside and jumped in the shower for the fastest wash-down in recorded history. I took her temp again another 5 minute later (101.3). He raced her to the ER and upon arrival her temp was 101.9! YIKES!
So they got labs on her, gave some broad spectrum antibiotics immediately and some tylenol to get that temperature going the other way. It was all really rather stressful and completely out of the blue!
Aria, meanwhile, was as happy as a clam eating red popsicles and watching a Curious George movie. She is so used to the routine now that she just settles herself in like some old pro. It is both incredibly sad and endearing.
Well, as luck would have it her counts were terrific, which meant that she would NOT have to be admitted! This is the first time she has ever gone to the ER with a fever and been able to come home. We were elated! Her doctor was on call that night, which was a huge bonus and told us to stop her chemo for the time being just to make sure that her counts don't tank completely. She told us not to be surprised if she spiked another fever and needed to be admitted because here we were facing this nasty bacterial ear infection that normally stays local to the ear only but for oncology patients can wreak some serious havoc on their bodies! Aria was able to come home about 4 hours later.
Naturally we watched her like a hawk all weekend long but she never once spiked a fever. In fact, she continually improved! I was amazed and so happy. It seems like we really are turning some kind of corner. It's as if her body is taking back some control and I can't really describe the relief and hope this brings.
I called the clinic this morning fully expecting to have to go in for labs in order to determine if her body is healthy enough to start her chemo again. To my astonishment, her doctor told me to go ahead and start her chemo again without labs! We don't have to go to clinic until next week! That means that we're still on schedule going to clinic every 2 weeks but at least we're not having to go more than once a week, which may not sound like a big deal to you, but trust me, it is HUGE!
I can see the light...the end of this part of the journey. It really is getting bigger and brighter. Her estimated date for end of treatment is around March 23 2010 nearly 28 months from her original diagnosis! I can't believe it...only 7 more months to go!!
Go Aria!! Go Aria!!! What a haul and I can't thank you enough for all you have done and continue to do for us!! With blessings always! ~julia
Aria being a total sassafras at my parents' party!! Her dress was made by an amazing seamstress I fell in love with at Farm Fair!!
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
|
|
willowtreecreek
True Blue Farmgirl
4813 Posts
Julie
Russell
AR
USA
4813 Posts |
|
|
Tina Michelle
True Blue Farmgirl
6948 Posts
Tina
sunshine state
FL
USA
6948 Posts |
|
|
Bear5
True Blue Farmgirl
13055 Posts
Louisiana/Texas
USA
13055 Posts |
Posted - Aug 03 2009 : 8:20:59 PM
|
What a beautiful young lady. I also love the curls.
Marly
"It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up- that we will begin to live each day to the fullest, as if it was the only one we had." Elisabeth Kurler-Ross |
 |
|
|
julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Aug 03 2009 : 8:50:35 PM
|
I should also mention that the little rash you see on Aria's cheek was something we thought was due to her goggles and swimming. Alas, it is a side effect of one of her chemo medications. Bummer! It comes and goes but there always seems to be just a little hint of it. Yet another reminder that she is doing well and yet not. Sigh...Still, she is rather lovely in her sassy way isn't she?!! ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
|
|
|
DaisyFarm
True Blue Farmgirl
1646 Posts
Diane
Victoria
BC
Canada
1646 Posts |
Posted - Aug 03 2009 : 9:22:15 PM
|
She's a darlin' Julia and looks fabulous.
Di on VI
Farmgirl Sister #73 |
|
|
|
jpbluesky
True Blue Farmgirl
6066 Posts
Jeannie
Florida
USA
6066 Posts |
Posted - Aug 03 2009 : 11:50:05 PM
|
she is really really a pretty girl. Thank you letting us peek into your lives because it helps us pray for you. It really does sound optimistic, and I so hope it stays that way!
Farmgirl Sister # 31
www.blueskyjeannie.blogspot.com
Psalm 51: 10-13 |
|
|
|
Marcy
True Blue Farmgirl
2701 Posts
Marcy
Tiverton
Rhode Island
USA
2701 Posts |
Posted - Aug 04 2009 : 05:28:03 AM
|
Julia,
Thanks so much for the update. Know that you are in my thoughts and prayers and I am so very glad that she is feeling better. Also, I am glad that she liked the doll that I sent her. Give her a hug from me and know that we all care and please keep us updated.
Farmgirl #170
Since you get more joy out of giving joy to others, you should put a good deal of thought into the happiness that you are able to give...Eleanor Roosevelt
http://marcysworldofcreativity.blogspot.com/ |
|
|
|
Amy Warwick
True Blue Farmgirl
102 Posts
Amy
Oakesdale
WA
USA
102 Posts |
Posted - Aug 04 2009 : 06:51:37 AM
|
Julia,
I think we need to plan a MJ Farmgirls get together for March 2010. I have been watching your facebook and wondering about Aria. I am glad I found this and so relieved that she is doing so well.
Hugs,
Amy
For information on SUMMER SNOW please visit www.amywarwick.com
It is the mark of an educated mind to be able to entertain a thought without accepting it ~Aristotle
|
|
|
|
khartquilt
True Blue Farmgirl
1176 Posts
USA
1176 Posts |
Posted - Aug 05 2009 : 07:08:42 AM
|
Julie,
She is adorable! My prayers are with you and your family.
Kathy H
Farmgirl Sister #81
"To the world you may be one person, but to one person you may be the world..." (anomymous)
http://khartquilt.blogspot.com |
|
|
|
CherryMeDarlin
True Blue Farmgirl
602 Posts
Cherry
Odenville
AL
USA
602 Posts |
Posted - Aug 05 2009 : 12:26:51 PM
|
Julia, that beautiful lil' picture just screams "ATTITUDE" to me!! I love it!! I christened Lauren "Sassy" right around the time she started talking, so I can fully appreciate likening Aria to sassafras! How wonderful for your typical moments. And may they become overwhelmingly numerous!
~~Cherry~~
http://cherrymedarlin.blogspot.com
"A thing is as simple or as complicated as you make it." --TT Murphy |
|
|
|
Lainey
True Blue Farmgirl
2401 Posts
Elaine
Waco
Kentucky
USA
2401 Posts |
Posted - Aug 07 2009 : 1:44:26 PM
|
I was thinking the same as Cherry! I love the expression on her sweet face. She's full of strength. You all are in my thoughts and prayers daily.
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.' |
|
|
|
kristin sherrill
True Blue Farmgirl
11303 Posts
kristin
chickamauga
ga
USA
11303 Posts |
Posted - Aug 07 2009 : 2:00:50 PM
|
Oh my goodness, she looks like Shirley Temple with all that beautiful curly hair! I can just see her in one of her movies. And what a great picture! What was she doing?
Kris
Happiness is simple. |
|
|
|
julia hayes
True Blue Farmgirl
1132 Posts
julia
medical lake
wa
USA
1132 Posts |
Posted - Aug 08 2009 : 08:31:40 AM
|
Hey everyone!! Thanks for all your wonderful posts!! Lainey!! so great to hear from YOU!! How are you!! how about sharing an update on yourself when you feel up to it?!! Needless to say, I gasped with delight to see your post.
Kris, I think about the package your sent Aria often. You are a doll!! In this photo Aria is looking at me and saying, "MaaaaaaaaaMaaaaaaaaa!" She was so sick of having her picture taken!! Crack me up
Marcy, there that dolly sits on Aria's bed!! So adorable.
Khartquilts...just folded your quilt the other day! It is always nearby in our playroom where Aria watches tv and often needs a blanket to snuggle. Is it horrible that I often use the blanket and don't let anyone else???! Ugh!! I know. Bad Mama, but it's true. There I've confessed it! I just LOVE it so much!!!
In this picture....
Many people at the party had been hearing about Aria for months and months..seen a few pictures here and there but never actually saw her in action AND in person. It really was a thrill so they were snapping her picture right and left.
She was also absolutely EXHAUSTED. Aria still naps most days. Chemo is just so fatiguing and add to that that Aria is kept chronically anemic. For most of us, we run around with a whole lot of energy when our hematocrit (red blood cell count) is 35+. Aria runs around with an average hematocrit of about 29 -30, which may not sound like a big difference but if you or I had that kind of count, we'd more than likely be in bed! This is why people enduring chemo are so tired basically all the time!
Aria has had a GREAT week. No fevers and her ear infection is all cleared up. Amazing! We go in for big gun chemo next week and an exam and then we gear up for sending her off to Kindergarten! We are so thrilled!!
thank you for all the thoughts, prayers and wishes. It means the world to me...
Just a quick reminder, if you're curious about her during those early days of her treatment, I'm still posting stories on my blog. I'm up to June of 2008 and I've posted some never seen before pictures. The ones on there now are of when she was losing her hair. It is so amazing! My blog posts aren't the usual short and sweet fair. Some of the posts are incredibly long....They really are like whole book chapters but I think there are some pretty nice stories there. Hey Kathy, there's another one on there about Aria and her steroids. I remember you saying that you can't eat spaghetti without thinking about her...Several people have told me that...This one had a different obsession but the idea is exactly the same. OY!!!
You know, it may seem weird to be going back and re-reading all those old posts as if it is in some way inhibiting me from moving forward...but I'm finding the opposite to be true. I re-read those post and I can see very clearly how far we have come. It gives me an enormous sense of hope. I also feel a great sense of awe regarding Aria and what she has gone through. Last but not least, the reality is that I'll never forget. I'll never really move-on in the sense that this experience will be but a vague opaque kind of memory. I think that is nothing more than the voice of denial. It will always be very real to me albeit dustier as the years go by. It isn't a matter dwelling on those memories. It is a matter of remembering though. Remembering as a way to honor Aria and those kids who have survived and those who have died. It is way to stay empathic to those who are just beginning the journey. It helps me ponder what it means to exercise compassion. This is part of embracing the journey and continuing on toward this next phase. I know I am equal to the task and I pray for the grace to be worthy of it too. ~julia
being simple to simply be
Farmgirl #30
www.julia42.etsy.com
www.about-aria.blogspot.com |
|
|
|
electricdunce
True Blue Farmgirl
2544 Posts
Karin
Belmont
ME
USA
2544 Posts |
Posted - Aug 17 2009 : 2:37:02 PM
|
I am glad to hear things are going well for your sweet girl, swimmer's ear is just awful, and I don't wonder she was screaming. What a lovely picture, and the dress, what I can spy of it, looks fabulous as well. A little rick rack always helps!
Karin
Farmgirl Sister #153
"Give me shelter from the storm" - Bob Dylan
http://moodranch.blogspot.com
http://domesticnonsense.etsy.com |
|
|
|
deeredawn
True Blue Farmgirl
2306 Posts
Dawn
Cordova
TN
USA
2306 Posts |
Posted - Aug 18 2009 : 07:21:26 AM
|
New new found friend Julia....I just found this post and am sending You and Aria get well wishes and hugs! I too "feel" something good about Aria when I think of her. She is strong. She is a fighter. Keeping your whole fam in my heart.
Dawn #279
MJ's Heirloom Mavens-QMD
http://harvestthyme.blogspot.com
http://maknfaces.blogspot.com
~Even if you're on the right track, you'll get run over if you just sit there. --Will Rogers~ |
|
|
| |
Family Matters: Aria Summer Update |
|
Aria Summer Update
