LEXI Update

I know that a lot of you have been following Lexi's journey during her fight with Stage 4 Neuroblastoma through me, so here is another update from her mom.

Lexi was diagnosed in June, at age 6, with Stage 4 Neuroblastoma. Feel free to following along her journey and leave her kind words of encouragement on the Caring Bridge Journal that her mom started shortly after her diagnoses. Not only is this site good for Lexi but is gives her mom and dad a place to turn to when they are down and need words of support and encouragement. All you have to do when you get to the website is provide your name and email address once. I know her parents could use all the support that they can get.

Friday, December 11, 2009 9:57 PM, EST

Hi there! We had another exciting day at the hospital today. Last night around 1:20am, I carried sleeping Alexis down to her CT scan while the nurse pushed her IV pole. She was a little heavy but she ways the same as Aaron so it was not too bad! We even had a baby blanket carrying her so it was almost as if she was a baby again!!

In the morning, the nurse woke me up and said that the CT scan showed that Alexis had fluid in her belly and that transport was on there way to take her down to have the fluid removed. The radiology team put Alexis to sleep for the procedure. They removed 1.5 liters of a white milky looking fluid. It was amazing on how quick her belly shrunk back to normal. Now we know why on Tuesday she weighed 40 lbs. We had wondered how she could not have gained that much weght so soon-especially since she has not been eating like she was putting on weight.

After the procedure, Alexis was wiped out. She didn't wake up until noon and then the only thing she wanted to know was if I had saved the peanut butter and jelly sandwich from yesterday and if she could eat it. when I said no she said well then I am going back to sleep! I was fine with this because I decided to take a nap too. When we woke up around 1pm, Alexis was still feeling the effects of the sedation. The only thing she could talk about was eating!! Then she ended up getting sick. For about an hour she was crawling on her head in bed in dramatic misery. We all felt so bad for her but the sedation medicine she was given made it almost comical.

After much waiting, we finally found out around 3pm that the fluid in her belly was lymphatic fluid that had leaked from surgery. Luckily, this issue will heal it's self. The doctors explained that even though it is rare to happen it is actually a common thing to happen during surgery. The funniest thing about the treatment for this is that it is recommended to go on a low fat diet! The fluid that was found in her belly is a fatty liquid and it is thought that if all fat is cut out of the diet the chances of fluid building back up in the belly is slimmer. Now if you know Alexis you know that the girl is way to skinny and it has been a challenge to put meat on her bones! Unfortunantly for Alexis, because of this she will need to have a tube put in her nose for tube feedings for extra nutrition. She will still be able to eat though.

The entire time the surgeon, Dr. Aldrink was talking Alexis was talking about being able to eat. She even insisted that Dr. Aldrink guess what game she was playing which was "Peanut Butter and Jelly". Alexis had the entire room laughing including the nurse, Amber, and Dr. Aldrink. She was actually even called "a ham" by Amber, which was hilarious because usually that title belongs to her brother. As soon as Dr. Aldrink decided Alexis could start eating again it took a matter of minutes before Alexis had a popscicle in one hand and a graham cracker in the other. If Alexis had her way she would of had a peanut butter and jelly sandwich and chicken nuggets! But, of course that was vetoed! Alexis ended up eating 5 packs of crackers before Amber dedided she was fine to begin eating her "low fat diet". The tube will be put into her nose tomorrow.

After we spoke to Dr. Aldrink, she contacted Dr. Ranalli to discuss chemo. All the nurses and the attending physicans assumed that chemo would not start until Saturday, but around 4:40pm Dr. Ranalli contacted the nurses and said that he wanted chemo started today. It may be a lot of work for the nurses and the doctors but for us it means we may go home a little sooner! Unfortunanlty though, I just spoke to Scot and they didn't start chemo until around 9 pm. The good thing is that this is the 24 hour chemo so it doesn't really matter when it starts.

After Scot got off work today, he came to the hospital to relieve me. I was able to get home around 8pm to see Aaron before he went to bed. Tommorrow, I am going to spend time with Aaron in the morning and afternoon and then take him to the hospital to switch with Scot. Scot and Aaron have decided they are going to go shopping together later in the day!

We have had an eventful couple of days but the amazing thing is that this is the first delay we have had. If the rest can be this easy to resolve then we will be ecstatic.

Love, Jen

Please continue to pray for Lexi and her family.