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Aria's first off treatment fever **UPDATE**

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T O P I C R E V I E W
julia hayes	Posted - May 23 2010 : 11:55:14 AM It started yesterday out of nowhere! She's on a T-ball team, the tigers! She was up and ready to go. By the last inning (they play 3) she was completely peetering out. She whined on the way to the car saying her hip hurt because her belt was too tight. So weird, so random. My alarms were beginning to chime. By the time we got going she was in better spirits. We stopped at a furniture store to buy bunkbeds for the girls that I had scoped out the other day! TOO fun. They were BESIDE themselves. Aria perked up big time! Bought those babies and made arrangements to pick them up later. Went to the grocery store for some juice. By the time I got out of the grocery store, Aria was sound asleep in her car seat. Doc had stayed in the car with the kids. I was gone less than 10 minutes. She slept for the 30 minute ride back to our farm. We brought her in moaning about her hip. I tried not to panic. Thoughts of relapse were bouncing around in my mind like a pin ball machine! She went straight for the couch and we tucked her in. We examined her. No real sensitivity around her hip. When she was first diagnosed, the pain she had in her shoulders was so severe that to even look at her shoulders made her cry. Oh it was so awful. This was very different. Worrisome but different. She was cool so we let her rest. It was 11 am. By 11 30, her cheeks were flushed and she was warm. Uh-oh. Fevers aren't good. On treatment or off. Fevers are bad for the immuno-compromised body. Checked her temp. 101.1. DANG it! I called the oncology inpatient unit at the hospital and spoke to the doctor on call. She told me to go ahead and give her one dose of tylenol and to call back if anything changes; runny nose, cough, more pain, different pain, sore throat, head ache, fevers, vomiting etc. The tylenol did the trick. What a miracle drug that is and she was terrific. She played for the rest of the afternoon and never once complained about pain. PHEW! WHAM, around 6 30, she put herself into bed and didn't want supper. Aria not wanting food? Gasp! Unheard of! I checked her temp and sure enough 101.9. I gave her more tylenol and did not call the doctor on call again. She was otherwise super fine. Her spirits were high and she looked fine. Bunk beds were being set up and the kids were about to lose their minds! It was 8 30 and they were ready to go. Aria and Reo wanted to sleep together on the top bunk. How totally cute is that? Rianna wanted the bottom one to herself! TOOOO FUN! Aria was super! We were relieved because Sunday morning, we had planned a Make-A-Wish horseback riding day in Idaho. Big party planned with cake and a special friend. Things were looking promising but I wasn't holding my breath. Anything can happen. Sunday morning, Aria and Reo were up at the crack of dawn. 5 15 to be exact. Sooo excited to go horseback riding! Aria was dressed and ready to go. She was perky and terrific. No fever! PHEW! they had breakfast and played. WHAM! 6 15, she is on the couch wrapped in a blanket sound asleep. She was cool and I thought it was probably good she was getting some extra rest. I called our Make-A-Wish coordinator around 8 and told him that we were a GO! I was packing a picnic lunch when I heard Aria waking up and moaning. "My throat hurts!" I went to her and took her temp. 100.4. BUMMER! It was 8 15 and I called the coordinator back and cancelled. I knew that her temp would more than likely rise. We broke the news to the kids. They were heart-broken and at the same time VERY used to Plan B! This is what we've done for over 2 years. They know the routine. Aria gets a fever and the thing we were gonna do we don't get to do but let's do something else! They know this so well. Aria napped and rested and she was in good spirits. She's pale and fatigued but ok. No pain and her sore throat is better. Around 11 30 I took her temp again 102.4. Tylenol is back on board and we are watching her VERY closely. If her symptoms change, then I'll take her into the ER. For now we are sitting tight. I'll be calling oncology first thing tmw and am planning on taking her in then. I really really really don't want to go to the ER. She's not in crisis..her situation is not an emergency. It needs attention but not urgently so we're really hoping to hold off until tmw. See see. So hard to know what to do and how to be. Right now I'm keeping the kids super quiet in front of the tv. Mellow is the name of the game. PLEASE keep us in the light..would you please??? Blessings, ~julia MONDAY MORNING UPDATE! Ok, here's the deal so far. Aria looks great. Her color is fine. No little red dots all over her body..no extra bruising. No real gray color to her skin. These are very typical leukemia signs. I'll add however that when she was first diagnosed she didn't have them then either! Still, the fact that she looks good is positive. The fevers have persisted since Saturday morning. They basically have run the course of her tylenol. Her temp has ranged from 100.4 - 102.5. When she was on treatment these temps would have been automatic ER runs. Off treatment the story is a little different. She is complaining of a sore throat but not all the time. She doesn't have a runny nose or cough. She's complaining of joint pain. This is the one that freaks me out the most. Taking a deep breath. My anxiety is high. Here's the deal. When I called oncology on Saturday I spoke to an oncologist I have never met. She's new to the practice. Her exact words were, "I feel comfortable letting you give her one dose of tylenol but if her fevers persist, please bring her into the ER so she can be properly checked. She's only 6 weeks off treatment...." Aria's had counting this morning 6 doses of either tylenol or ibuprofen and we have not taken her in. I know. I feel so weird/icky about it. It's a judgment call. Here's the thing. Doc, my husband is a doctor. He's not an oncologist but ironically he rotated through pediatric oncology with one of Aria's doctor's 11 or 12 years ago in Seattle! (Small World) Y His comment to what the oncologist said was, "Very conservative approach. There's absolutely nothing wrong with that. But she doesn't know Aria. She doesn't know you. She doesn't know me. She knows nothing about our history. The most important thing is Aria is not in crisis. She is playful and alert. She is not lethargic and riddled with pain. There is nothing 'emergency' oriented about her at all." Doc is absolutely right so I've held off. I've wanted to take her in for my peace of mind but let me tell you, it would have been such a huge waste of not only time but money and procedure. The ER has their protocol; chest x ray, urine sample, stool sample if possible, nasal swab, throat culture, multiple blood draw, IV, etc..etc.. That's just when you first arrive by the way! It is over the top and when she was on treatment was very necessary. Still necessary now? I don't know. So trying not to bite my nails down completely, I've waited until now to call the Oncology outpatient unit where I can hear our nurse and doctor's voices. They will tell me exactly what to do. My hunch is that I'll need to go to our regular doctor. Breathing deeply. I'll need a great deal of patience. They are completely unaccustomed to oncology kids so I have to do a lot of educating. I can't blame them. You don't know what you don't know. So, breathing deeply, I will advocate for Aria. I will educate and I will be very very patient. This will be my day. There's a big chocolate cake sitting on my counter. cake and coffee sounds good right now doesn't it? Here I go...THANK YOU for being with me. It helps bear the burden.... All your thoughts and prayers are being felt and heard. I have no doubt. I'd request that each of you enjoy the day. Smile a lot.. you just never know who might need it!! Blessings, ~julia being simple to simply be Farmgirl #30 www.julia42.etsy.com www.about-aria.blogspot.com
13 L A T E S T R E P L I E S (Newest First)
knittinchick	Posted - May 24 2010 : 3:41:28 PM I'll keep praying for you and Aria Julia! God's Blessings, Megan aka Loretta Rae At heart, I am both a sassy city girl and a down-home country gal.
dutchy	Posted - May 24 2010 : 08:38:04 AM Still praying for you all sweetie Hugs from Marian/Dutchy, a farmgirl from the Netherlands :) My personal blog: http://just-me-a-dutch-girl.blogspot.com/ Almost daily updates on me and mine :)
Fiddlehead Farm	Posted - May 24 2010 : 06:07:42 AM Julie, you are so strong and I pray for your little Aria. Age only matters if you are wine or cheese. http://studiodiphotosite.shutterfly.com/ farmgirl sister #922
Annika	Posted - May 23 2010 : 10:18:21 PM Hugs, light and love to all of you. I hope the wee mouse feels well soon! Annika Farmgirl & sister #13 Palouse Prairie Girls Chapter http://palouseprairiegirls.blogspot.com/ http://prairiegirlsjournal.blogspot.com/ Simplicity is the ultimate sophistication. ~Leonardo DaVinci
jpbluesky	Posted - May 23 2010 : 10:06:42 PM I am up late tonight and just read the above post about Aria, and hope your night is going okay. I am praying this fever and whatever bug she has will help her immune system to grow stronger. No matter what the situation, fevers are scary, but more so for your family...and I am praying for you all! Farmgirl Sister # 31 www.blueskyjeannie.blogspot.com Psalm 51: 10-13
tea_lady_tammy	Posted - May 23 2010 : 6:57:00 PM Praying for you all Julia...Hoping she feels better tomorrow. Keep us updated. hugs tammy Tea is like being in the stars with God. http://breathsoffaith.blogspot.com
CountryBorn	Posted - May 23 2010 : 6:10:45 PM Julia, You are handling this so well. I know it must be hard to not press the panic button. But, you know all the things to look for and are a pro at making the right decisions. That's what a whole lot of experience does for you !! I know it will take time for her immune system to really function normally again. But, that Tylenol sure seems to help. I think that is a very good sign in it's self. She is one strong little trooper and I know she will be fine. Your whole family is a bunch of little troopers! It's hard to be disappointed like that, but, they know you will make it up to them. That's pretty darn good for little kids I believe! I always keep you, Aria and your whole family in the light. That will never change. But, I will ask the light to burn a bit brighter right now. Love and hugs to Aria and you, Mary Jane There can be no happiness if the things we believe in are different from the things we do. Freya Stark
1badmamawolf	Posted - May 23 2010 : 5:35:32 PM Julia, you and Aria have been in my prayers for a long time now, as well as the rest of your family. I will continue to pray fro you all... "Treat the earth well, it was not given to you by your parents, it was loaned to you by your children"
knittinchick	Posted - May 23 2010 : 4:25:28 PM I'm praying for ya Julia! Aria too! God's Blessings, Megan aka Loretta Rae At heart, I am both a sassy city girl and a down-home country gal.
melody	Posted - May 23 2010 : 2:31:59 PM Julia...I read your post with my breath on 'hold'. It is probably nothing dear friend. Your adrenalin is a finely honed instrument-your body is still in that wait and pounce mode. Sorry I am not there to be with you-Sorry I am so far away to do nothing but respond probably in the lamest way possible- BUT, I am thinking of you and sending good healthy thoughts your way dear friend. Know that you are loved! Keep the chicks close-Julia Melody Farmgirl #525 www.melodynotes-melodynotes.blogspot.com http://www.farmgirlhistory.blogspot.com/ www.lemonverbenasoap.etsy.com www.longtallsallys.etsy.com
Sheep Mom 2	Posted - May 23 2010 : 1:17:14 PM Julia, Aria is definately in my thoughts and prayers. How stressful for all of you and so disappointing to the girls! Keep us posted on how things go. Blessings, Sheri "Work is Love made visible" -Kahlil Gibran
Marcy	Posted - May 23 2010 : 12:39:44 PM Julia, Keeping you all in my thoughts and prayers. Poor little sweetheart, hope she feels better soon. You are all so very strong and have been so inspiring to me. Thank you so much for letting me be a part of your journey. Give them all a hug for me and please keep us posted. Take care hugs Marcy 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/
dutchy	Posted - May 23 2010 : 12:38:58 PM Julia, you all ahve my prayers. POOR Aria and POOR you as well. Must be sacry Hugs from Marian/Dutchy, a farmgirl from the Netherlands :) My personal blog: http://just-me-a-dutch-girl.blogspot.com/ Almost daily updates on me and mine :)

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