Tuesday, May 18, 2010

Lexi Update: 2nd Rounds of Antibody Infusions

I thought I would share some pictures of Lexi that I have taken over the past few years. She is such a beautiful little girl.

This is the journal entry that Lexi's mom posted today on their Caring Bridge site:

Monday, May 17, 2010 11:11 PM, EDT

Hi Everyone! I have so much to write about. I admitted Alexis back into the hospital today for another scheduled treatment. This is her second round out of six for the Antibody therapy. For this round, Alexis will be discharged on Friday but then unfortunantly she has to be re-admitted on Monday for another 5 day stay. This week shouldn't be too bad, but next week she is going to receive the drug that she had the first round (the one that causes bone pain) and a higher dose of the drug she is getting this week. This week's drug is a 24 hour infusion for 4 days so the hospital stay wasn't an option.

Today has been a strange day, but so far Alexis's side effects haven't been too bad. The nurse practitione
r was held up today so despite our 9:30am admitting time, Alexis's infusion didn't start until 1:40pm. It was funny because the only time until bed that she felt nauseated was before the infusion even started! Over all today has been a great day for Alexis. At lunch, she refused the hospital food but when I gave her some leftovers I brought from home she gobbled it up. She also ate dinner very well-even though it was a strange combo: Fried rice with soy sauce, a fortune cookie with strawberry yogurt and m&m cookies. We do our best to get her to eat anything! She has also been in a great silly mood off and on today. She was dancing silly in the hall, wrote "Alexis is a star" on the nurses dry erase board in her room and kept trying to distract me so she could win at Air Hockey in the playroom! We had a good time together.

e past two weeks have been a struggle for us. Up until about 5 days ago, Alexis was still feeling crummy from the last treatment. This has made the daily routines with all of Alexis's medicines and treatments a challenge. Since Alexis moves on Alexis's time, it has taken about one and a half hours two times per day to complete everything that has needed done. Luckily, today was Alexis's last day of the Retinoic Acid (since she can't swallow the pills, I dissolve them in milk and then put the residual medicine from the cup on a piece of bread for her to eat)! By the middle of last week, Alexis and I were worn out! She kept saying to me why do I have to have cancer! Today was rewarding though because the nurses told us that Alexis's skin looks great! Retinoic Acid causes skin irritation and can even burn the skin if creams are not applied. Alexis has rashy areas all over her face, arms, neck, belly and legs. Since we have putting creams on twice a day we have kept these areas under control. The nurses compliments meant a lot because we have worked hard to keep her skin under control! Anyway as I was saying Alexis felt crummy until recently. On mother's day weekend, we were able to get together with some of Alexis and Aaron's cousins. Aaron had a great time but Alexis didn't have a lot of energy. She barely played at all. She didn't even start to eat well until last week. She is now at 38 lbs. It isn't much weight gain but at least it is going up!

Today on the way to the hospital we received great news! The doctors finally gave the Make a Wish foundation the okay to plan our trip to Disney World for either October or November! When I asked Alexis if that sounded like good news to her, she said "No why do we have to wait so long!" Of course our first choice of dates is going to be during the week of Alexis's birthday which is October 18th! We are all very excited!

e of you may have seen Scot on the news two weeks ago! One of Scot's new coworkers child attends the Ohio School for the deaf. The week of May 3rd, this school represented Alex's Lemonade stand foundation to help raise money for Pediatric Cancer research. The friday before the fundraiser we received an email from the coordinator of this project stating that she heard about our daughter having cancer from Scot's coworkers wife and wanted to know if they could honor Alexis as one of their local hereos to help raise money for Pediatric Cancer Research. We were very honored to have Alexis be their local hero. On Wednesday, Scot went down to the lemonade stand with his coworkers to show our support for the cause. While he was there for a short time the channel 10 news cast just happened to stop by and interviewed Scot! He was caught off guard but did a nice job! We want to thank the Ohio School for the Deaf for honoring Alexis and for the care package they sent! Alexis loves the sewing machine!

The next two weeks, I am working som
e and staying with Alexis the rest of the time. Scot and my mom will also be staying with Alexis some days. Aaron is staying with his grandparents during the days and will get to see Scot and I some of the nights. Again we are happy to have such great support! We definitely couldn't do everything without the support of our parents!

e Care, Jen


Alexis in a tree at our house.

If you would like to catch up on Lexi's story, you can read all about her here. Please keep her in your thoughts and prayers.



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