A better day
Today was a better day! Â Looks the likely hood of re-intubation has past and Aria is out of the woods.
Aria was pretty emotional today. Â It was a little tough to manage her, I felt really bad for her. Â She realises her hair has gone. Â She came across a photo I took of her lock of hair and pointed to her head and said ‘all gone’. Â She cried a lot for her daddy who came in a bit early for more family time.
But the evening though, she moved PICU rooms and started colouring and laughing a bit. Â So that was nice. Â We got one without windows in the rush and drama of Thursday so we changed to a nicer one this afternoon which we were grateful for.
On the cancer front it wasn’t such awesome news today.  So I think I am going to obsess less about the ANC number.  I think I need a lesson on all this stuff so will be chasing for one tomorrow.  Anyone know of any good reading resources beside Wikipedia?
Not sure what the plan for the week is. Â Her chemo lite has been delayed so hopefully that will be tomorrow. Â New team tomorrow and a new plan.
Good news (if that is possible) the reason for Aria’s crash on Thursday was most likely a big fluid shift caused by the chemo. Â During the whole drama her gut dumped out about 800mls in 20 mins. Â Likely the chemo (temporarily) destroyed the cells in the lining of her gut. Â I am told long term her gut will be fine. Â So it was not from being septic (bacteria in her blood). Â I was told she would still be on the vent if that was the case. Â But we just are praying hard that she does not catch anything because she would get very very sick.
A big thank you too all those who turned out to pray for Aria yesterday!  We really appreciate it!
18 Responses to “A better day”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 24 Apr at 8:31 pm
You are awesome Aria! Hope you enjoy your nicer room and get to go home soon. always in our prayers.
# 24 Apr at 9:09 pm
Great to read of Aria’s improvement on a number of fronts. God is so so good! Praying for you all.
In Christ
Tony
# 25 Apr at 3:05 am
I think I would have a cry after all that too! It must have been the toughest thing seeing her losing her beautiful hair. I ope it all grows back quickly once the treatment is finished. Probably a good release for her to have a cry and nice to have you guys there.
I wasn’t at the prayer mtg yesterday but was praying where I was. Will continue to do so until Aria is back home.
Love, Jo
# 25 Apr at 6:14 am
“One Day At a Time Sweet Jesus” Thank you again for answered prayer. Praying for more good days and strength for the bad ones. Way to go Aria.
# 25 Apr at 3:26 pm
So glad to see things are improving. One day at a time. Praying so much for you all. Xx
# 25 Apr at 4:26 pm
Here’s the site for the British Medical Journal that I hope you’ll be able to get to and that it provides some useful information.
http://bestpractice.bmj.com/best-practice/welcome.html
# 25 Apr at 4:43 pm
Anita,
We’ve never met, but I have seen you and your sweet Aria in person. We were neighbors a few times this past summer. Separated by a few doors on the PICU floor at UNMC. I have followed your journey for a while.
I’ve spent many a day next to my Ashley’s bed side in those very same halls that you and your Aria are currently in. I understand your words, your emotions, your journey. We too have taken it. We too are still on it.
I’m writing to let you know that I am praying for you and your family. My heart was crushed by the diagnosis of Aria’s PTLD. Ashley battled it early on after her first transplant. It was grueling.
We are facing another liver/bowel transplant. I’m trying to find the courage to bring Ashley back. Knowing its our only hope of keeping her with us, but also knowing the realities of transplant and all that it involves. Currently we are allowing her to be 5 years old while we wait for peace and direction to come from the Lord. We are hanging on to all of the good days as we anticipate re listing her and returning to the path that we have been set to walk with her.
I just wanted you to know that you have another family thinking of you, praying for you, and understanding all you are enduring. Sincerely, Trish Adams
# 25 Apr at 5:50 pm
Hello, I haven’t written before but have followed little Aria’s story every day for over a year now. We are so sorry you are having all these hiccups now and just want you to know that even though we couldn’t get to special prayer meeting, we prayed for Aria and do so every day. You are an amzing family and our hearts go out to you battling through all these ups and downs, in a different country away from all your family and friends.
# 25 Apr at 7:31 pm
That had to be hard for Aria, to see her hair gone. Glad she had some fun with coloring though, to pick her spirits up a little. She is the bravest little girl I know! I know God is with her! God Bless!
# 25 Apr at 7:31 pm
Still Praying for you guys (: SO glad to hear you moved out of our old room… my mom almost fainted when I told her that was Aria’s room. It’s the worst! Blessings to you guys.
# 25 Apr at 7:43 pm
Thinking of your all. I follow your email messages and am always amazed by your strength during such difficult times.
Lots of Love
Brenda
Here are a few medical sites you may find usefull.
http://emedicine.medscape.com/
http://www.ncemi.org/
http://www.aafp.org
http://familydoctor.org/online/famdocen/home.html
# 25 Apr at 10:42 pm
How do you all do it? Such trials and tribulations and ups and downs – you must be such strong people and your faith which has been so very tested, must be the strongest I’ve known. Love to you all.
# 25 Apr at 10:50 pm
It was so good to read the email from Trish Adams who really knows what you are going through. What a sweet lady to share her journey with you. So now I will add her little one to the prayers I say for Aria and you guys. Just holding you all up before the Lord! God bless-love, jeannie
# 25 Apr at 11:38 pm
Ditto Joan Marshall. Your strength & faith AMAZE me. Rock On. Luv M x
# 26 Apr at 1:56 am
Pleased to hear that there is a little good news. Sorry that Aria had such an emotional day but glad she picked up by the end of the day 🙂 Also glad that you’ve got a better room. We said special prayers for Aria on Sunday (SA) and we continue to keep you all in our prayers and lift you up every single day. May God continue to pour out blessings on your entire family and heal Aria completely. Blessings xx
# 26 Apr at 6:07 am
Windows in a hospital room are everything 🙂 And when it comes to Aria: bald is always beautiful.
Sending you our love Anita and Hamish, and our prayers for Aria’s FULL recovery and wellness. One day, one happy day soon I pray, there will be no more rollercoastering and you will all be home. XXX
# 26 Apr at 7:14 am
Thank you Anita for such good news, we could always do with some dont we? Hope and pray that you will continue to improve Aria from now on. God bless you all dear MacDonald family and bless Aria to heal completely amen.
Thanks everyone on the blog for such encouragements for Anita Hamish Ashe and Princess Aria, God is sooooooo goooood amen.
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