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spctbone

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Haley is still out of it today. She does not have any new blood clots and the other two have resolved. But the infection is back and with a vengeance. Her blood cultures came back positive and her lactic acid level for the sepsis is still elevated. Last night after we left she spiked a fever of 105 but with ice and fans it is down to 100. We are praying for good news with this next set of labs and for her to wake up getting better.
 

spctbone

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Not so good news today. The doctors said that Haley is going to continue getting these infections and it will probably be what takes her from us before the cancer. They said that either the infection will be so bad it can't be corrected or we will get to where the antibiotics are just not working from resistance build up. We have no definitive answer as to how much time we have with her but we are going to try and do our best to do whatever she wants. They are most likely sending her home with hospice after this stay. We had to cancel the cruise because they do not want her away from land and hospital for that long. Which sucks because she really wanted to do the cruise, hold a sloth and other wildlife and swim with the dolphins. We will figure out a way to do these things on US soil somehow. Not the update I wanted to give but there it is.. we love Haley more than anything and will fight as long as we can.
 

Union Co. Boy

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It's really tough to hear that she is struggling so much with this. Just know that she is in our prayers every day.
 

spctbone

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Yet another not so good update, We sent all her records to MD Anderson for then to go over prior to us heading that way. They called us back and said that there is nothing they can do for her, and said in their opinion she has at most a year to a year and a half left. We are just gonna make everything we can happen for her. Please continue to pray!
 

cbhunter

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Yet another not so good update, We sent all her records to MD Anderson for then to go over prior to us heading that way. They called us back and said that there is nothing they can do for her, and said in their opinion she has at most a year to a year and a half left. We are just gonna make everything we can happen for her. Please continue to pray!
More prayers bud
 

spctbone

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I have no words so I will just post what Haley's mom put in her FB page today. 💔


So the last two days have been a bit of a blur, but Sunday we were getting ready to load up and head out for our trip to The Still Place for the week. I went to get Haley up and dressed and noticed that she was bright red from the bellybutton down to her toes. I immediately called the hospice on call nurse and gave Haley two options. 1. Go to the hospital and be treated with IV antibiotics or 2. Wait for the oncall nurse and probably pass away from the infection. Haley chose number 1 because she said she wasn't ready to die just yet. So ambulance ride here we come. We got to the hospital and she never got as bad as the last two times where she didn't know what was going on or anything. She was alert and coherent most of the time. We spent two nights loaded up with iv antibiotics and got sent home today because her kidney function had decreased from all the iv antibiotics. We were told that the next infection would be the one that took her from this world. It's been about three weeks in between each one. I'm not ready to lose my baby, my first born child. We are planning an emergency vacation with all close family and friends. We are not ready for the next month to be over and I wish I could freeze time or find something that will cure her. We love all our supports and our group on here. We will keep you posted with lovely pictures over the next few weeks. Here are a few we did not get to post.
 

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spctbone

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So for those of you that know Haley we were told she had about 2 months to live. It has been two months. Our hospice team has been phenomenal and doing a great job giving us more time to do what she wants. When we were petrified of losing her I spent most of the money renting a big enough house for all friends and family that wanted to go. Now she still wanted to go to universal studios for Harry Potter world. Her tumors are getting worse and pain has increased tremendously but she still wants to go. So I put a hotel on hold and got universal to help with some discounted tickets we can not pick up and pay for until we get there. But she wants a cape and wand with the Harry Potter experience while she is there. If I could ask for your help one last time to do this one last thing it would be absolutely amazing. When I told her I booked a room she grabbed me before finishing my sentence hugged my neck to where I couldn't breath. She was crying and wouldn't let go. Pass it along to all your friends for those of you who have already helped. I am posting a picture of a text I got from her after I left her room 1683844952792.png
 

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