Monday, June 6, 2011

Poor Ally.....

I will start off this post by saying that Ally's spinal fluid came back clear. No cancer cells. Her ANC was hovering around 2200 and her bloodwork looked ok. Dr B did not change any meds for her. We are soo soo happy and relieved at this news.

However, Ally had one of the roughest days at the hospital yet. It seemed like everything that could go wrong did. It started when they accessed her port which is located in her chest. They always do this first....and then start her on a bolus of IV fluids before her spinal. I was not at the hospital yet for this, but apparently the first nurse went in with the needle to the chest and missed her port. Of course, this results in crying and screaming because it hurts. She called another nurse in....and that nurse tried to access her port. Also failing to get to the right spot and unable to get a blood draw (that is how they know they are "in" there....they pull back on the syringe and blood comes up). Ahhhhh. At this point, she was crawling out of her skin. Poor Ally and poor Jerad who said the entire fourth floor could hear her yelling. They finally called in her normal nurse, Susan, who tried a third time and had to wiggle around a a bit (also painful) but finally got it. Makes me so sad, especially when Jerad said she was crying for Mommy. :( I was getting Carly off to school and got there right after.

After she settles back down and gets her fluids, Dr B says it is time to go for the spinal. Early too. They take her into the procedure room and give her some meds to sedate her a bit. She really never goes to sleep....but she also never remembers the spinals. Which is good...because it took three times to get the spinal too!!! Wow it was super hard to watch. Every time he even touched her she would yell and he kept poking around with the needle between her vertebrae trying to get the fluid. Except no fluid was coming (except blood, of course) After two tries with her laying down, they finally got a few people to sort of hold her up and she laid on a bedside table. So she was kinda sitting this time. He eventually got it, but she was so miserable and in pain and I could not handle it well. I ended up silently crying through the whole thing. Looking at the bloody mess on the table and praying the fluid would just cooperate and we could be done with it. Jerad says...well you can get up in front of 500 people and tell our entire story, but you can't make it through the spinal. On the contrary, he can't talk about it in front of anyone, but stays strong during the procedure. I guess you could say we compliment each other well. :)

After getting her IV antibiotic and some chemo, we got to go home later that day. I asked her about it on the car ride home and she didn't remember the spinal at all. Thank God for verced. She does remember the port mishaps. She kept a heating pad on it for about three days. We did several doses of vicodin. She missed school Wed, Thurs, and part of Friday. Unfortunately, she is still really suffering from belly pain and also just finished up the evil steroids for the month. I hope she turns the corner here soon because there is swimming to be done and summer fun to be had. You can just tell by looking at her that she is not feeling so hot.

The next night (Thursday) she got to be the honored hero at the LLS Man/Woman of the Year event at the Schuster. It turned out to be a beautiful and moving night, so I think I will save that story for next time. But a hero is exactly what she is.


  1. I can only imagine how hard that must be. My very small taste of the poking and crying lasted less than 24 hours. It was so hard to watch my little one scared and in pain. The good news, once again, is that this is almost over for ALL of you. Stay strong and know I still think of and pray for you daily.


  2. I started this thinking it had happened again, so glad this was a replay! Hope the last week of school is going well for her.

  3. Ally,you do not know me, I am just one of many who follow your journey. I want you to know that you are such an inspiration to everyone. When I am faced with a medical situation that causes even an old woman like me to be scared, I just think about you and how brave you are! You rock Miss Ally Barnett!!!! Love to you and your awesome family. Char

  4. Thank you so much for posting. You are right, Ally is a hero! And she remains in my prayers.

  5. I think you all are heroes. Thanks for sharing your story. It breaks my heart, though. So happy for clear fluid, but still sending thoughts of strength and a fast swimming Ally.

  6. I agree with Jodi, you are all heroes, your entire family, and that is why you are winning this battle. I always said, "Hurt me but don't hurt my child" It is so difficult to see them suffer but as you said the drugs make her not remember. Glad about the clear fluid and no cancer cells but sorry about the port mishap. Went through those spinal taps with John and the port access and it is very hard to watch. Here is hoping for a quick recovery for Ally so she can start the swim season and you guys can get your dose of chlorine!!! Happy days ahead for all of you, thanks for keeping us posted.

  7. Wow, Ally looked amazing the day after this terrible experience! I had no idea all that happened, although you did say she had a spinal tap. Ally is my hero! And so are you and Jerad for all yup do, and staying so strong!

  8. So sorry Ally had to go through all that, but rejoicing with you over the good report! Praying for you all!

  9. Hi Ally
    My name is Jenna and I came across your site. U are an amazing, courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspirational hero. I am praying for you. I was born with a rare life threatening disease.