Lexi Update: 1st Rounds of Antibody Infusion Complete

I just want to keep all of you posted on how Lexi is doing. This is the latest post from her mom on their Caring Bridge site.

Tuesday, May 4, 2010 11:46 PM, EDT

Hi everyone! I just wanted to write a quick update. Alexis came home on Friday late afternoon. Aaron and Alexis were extremely happy to see each other. Even though Alexis wasn't feeling the greatest she wanted to wake Aaron up from his nap to see him. We didn't let her but she was sure to give him a hug as soon as he woke up. Alexis didn't have the greatest weekend. She spent most of the weekend laying on the couch and battling pain. I had some oral morphine that I was giving her, but after a couple doses of no sucess I switched to tylenol and it amazingly worked! Alexis hasn't needed tylenol since Monday, however she is still very weak and trying to recover. She is trying so hard to eat but her appetite is still going in spurts. She had a physical with her oncologist today and her weight has dropped 1 and a half pounds. This brings her weight back down to 36.3 lbs. So here we are again with two weeks to get her weight back up before she is hospitalized again for two more weeks. She hasn't even grown more than an inch since she was diagnosed.

Today was the day that Alexis had to start taking Retinoic acid. This is the most important med she has taken to date. It will help keep the cancer from returning. The problem is that it only comes in gel caps and she has to take 3 two times per day. The best way to take it is to swallow it. Unfortunantly, Alexis has not mastered this yet. This morning ws absolultely miserable for all of us to try and get Alexis to swallow the meds. She did swallow one, and we were extremely proud of her for doing this. The other 2 gel caps had to be cut open so we could squeeze the liquid out onto a peice of bread. This worked okay but we know that we weren't able to get all of the medicine out. This evening, we tried to dissolve the medicine in warm milk. We weren't able to completely dissolve the gel caps but it was much easier for Alexis to swallow. It only took half and hour to coax her to swallow it compared to over and hour this morning. Hopefully with time she will get better and better. It didn't help that she didn't feel good today.

Please keep Alexis in your thoughts and help her have the strength to get these important meds down as well as the ability to eat.

Thank you to all of you that continue to support us in anyway you can. We appreciate it more than you know.

Jen

You can read everything that I have posted about Lexi HERE! Please remember to keep her and her family in your thoughts and prayers.