Lexi Update

Here is the most recent update from Jen, Lexi's mom:

Thursday, March 11, 2010 8:05 PM, EST

Hi Everyone! Sorry it has been such a long time since I have updated. We have been very busy! It hasn't helped that last Thursday I felt a cold coming on. As soon as I realized it, I started using nasal spray, gargling with salt water and taking my allergy pills. It actually worked very well and has held my cold off except for a hoarse throat and tiredness. I still feel like I have something lingering there, but have managed to keep everyone else from catching it. When Alexis came home from the hospital she had a clear runny nose. It finally cleared up last week and she has been cold free since.

Alexis is recovering more and more from the transplant everyday! It has been 43 days since the start of her high dose chemo and she has yet to bounce back to being completely normal. She is getting very close though! The BMT team told us that it would take much longer to recover this time and they were right. We were use to it taking a week! At the end of last week, Alexis finally began swallowing her spit consistently again. After her high dose chemo, her spit was so thick that she said it tasted horrible when she swallowed it. Her nausea has pretty much subsided as well. Last week she only vomitted 3-4 unexplained times and this week I think it was only once. Her appetite is slowly coming back. Last week she only ate about 30-40% of her normal. After the TPN nurse cut the TPN back to every other night last Friday, ALexis has been eating more and more. The last few days you can actually tell on the night's that she is getting ready to be hooked up to her TPN because she starts eating small amounts every 45 minutes. She still can't eat a lot at once but her stomach is starting to get bigger again.

Last Friday, I took Alexis to the BMT clinic to see her transplant doctor, Dr. Soni. During the visit, Dr. Soni told us it was time to start planning for radiation. He explained that Alexis would need to attend 12 sessions of radiation for about 10 minutes each session. The radiation will actually be done at the James Center at OSU instead of Children's. The areas that will be targeted are the 6 points in her bones that still show signs of cancer (shoulders, legs,hips) and the area that her tumor was removed. Dr Soni also said that Alexis will most likely need several blood and platelet transfusions. He stated that he won't be surprised if she actually needs to have more of her own stem cells again from the radiation. Thankfully, this won't be a problem because Alexis has a lot of her stem cells still stored at OSU. Since we discussed radiation with Dr. Soni, the radiation team has contacted us and we are scheduled for a consult appointment at OSU tomorrow at 4pm.

This appointment posed a challenge to get myself, Scot and Alexis all at the appointment, but I think we finally came up with a solution. I will be at a conference for work until 3:30 pm (luckily it is in Columbus), Scot will be working until the appointment (also in Columbus) and my mom is taking Alexis to her clinic appointment at Childrens and then bringing her to the radiation appointment. Since Aaron can't go to the clinic he is staying with grandma and grandpa Howard tonight so they can watch him tomorrow.

Last week, Scot started working on Thursday's again. Now Bill and Elaine are watching the kids 4 days a week instead of 3. Scot will be able to take time off if needed but his sick time is running out so we wanted to save some of it for emergencies. My mom is still watching the kids on Fridays, but she too had to start working an extra day, so for now she is working Sundays to have Friday off.

After the radiation, Alexis will have 3-4 weeks to rest. Then she will begin the antibody therapy treatment. This will take 6 months and Dr. Soni has already warned us that it is a tough treatment. The pro of this treatment is that it increases the survival rate and chance of relaspse by 20%. The con is that the main side effect is very painful aching of the bones. This type of therapy for nueroblastoma patients just came out in 5/09. At this time it was in the middle of a phase 3 trial when the trial was stopped and the therapy became the standard treatment. Even though this treatment means another 6 months of being in and out of the hospital we are overjoyed that is available to us!

Last week, Alexis's teacher began coming to work with Alexis again. Mrs. Tucker felt that Alexis has not been able to cognitively think the way she used to before the transplant. She mostly noticed it with simple math problems and predictions of stories. I am hoping these skills come back just like we are still waiting on her appetite to come back.

We are very glad the weather is getting warmer. We are starting to go stir crazy. Alexis is doing well with being cooped up in the house though. We want to start having visitors come over to break up her day some. As long as they aren't sick she can have all of the visitors she wants. We are suppose to limit visitors under 12 though.

Well I need to go. Take care and have a great week. Enjoy the nice weather!

Love,
Jen

I got to visit with Lexi and Aaron yesterday for a few minutes. They were outside playing when I went to get the kiddo off the bus. It made my day to see them, I sure do miss them. They both looked like they were having tons of fun playing outside in the fabulous weather we were having.

Please keep sending prayers her way.