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Good evening,

It's been a crazy emotional day, it didn't start good but ended good.
First Hailey's labs came back very low and her potassium extremely high which could be dangerous to your heart. 
We were both upset, they didn't believe the potassium could be that high so they re did her labs and the potassium was normal. What a relieve, they then decided to re do all her labs something happened with the clotting/ to many cells together making the reading inaccurate. After a long day results came back and her numbers same as two weeks ago thank you god. Her PFT was after this scare so you can imagine what state of mind Hailey was in. I wanted to cancel PFT, but it had to be done her numbers were a few point lower but taking in consideration that she was upset and crying we are calling it same as before. 
They didn't drop below the original scare so we are good. The doctors are happy with the numbers. She will continue with the IV steroids every other week for 2 months and then another PFT. They will re-evaluate her at that time. That could be the end of this treatment and then we watch her to make sure she holds her own. With the medications she's on and god help this nightmare will come to a halt. We have no choice in the matter so it will be what it will be, tears are always shed because we just want this to be over with. 
I want her to enjoy life and just be normal like all her friends, nothing worse for parent to feel so helpless !!!!! I'm suppose to fix things make it all better like when she was little if she got hurt mom would kiss her booboo put a band-aide and it would all be well. I can't do that no band-aide big enough to fix this problem. 
I have faith his will all be good soon, but let me tell you sometimes your faith gets challenged. For example today I saw Mr Toma (Vlad's dad) very difficult to see him. I was only able to speak to him for such a short time, since Hailey's doctor was in room speaking with us. 
We hugged and cried, he said he misses him , it broke my heart !!! I can't imagine what this poor dad is going through, he's going home with his son in a casket !!!!!!! God please give them strength, comfort and peace. I'm crying as I write this for so many reason one we are blessed we have Hailey here with us and the other for a lovely sole that no longer is here with us. Why??? 

I can't write anymore to much to think about, please continue praying for us and all, the St Jude  children facing this awful disease. Please extra prayers for the Toma family.

God bless
Aimee 


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Joanie McInnis
By Joanie McInnis
Keep the Faith. We are here praying for you.

xoxoxo
Joanie and Tom