Lexi Update!!

I just got this update from Lexi's mom, Jen on their Caring Bridge website.

Please make sure that you send Lexi a card via Nationwide Children's Hospital, the name is Alexis Howard and her room number is 5316.

The hospital prints these cards off every morning and takes them to her. She loves getting cards to read.

Monday, August 16, 2010 4:50 PM, EDT

Hello Everyone! Alexis is back in the hospital for her last planned scheduled admission! She will be getting the last IV transfusion of the Antibody Therapy. This is the treatment that causes bone pain, high fevers and irritability. The good news about it, is that as soon as the transfusion ends her bone pain in her stomach and neck usually disappear.

The hospital staff brought a sign for Alexis's door that says way to go last chemo and a gift! It is pretty cool because the staff can stop and sign the sign for her. I also thought it would be pretty cool for Alexis to receive as many e-cards as possible to celebrate what will hopefully be her last stay at the hospital(at least for a while!).

Here are the instructions for sending free e-cards:

Go to the hospital web page at: www.NationwideChildrens.org and click on the parents/families/visitors link on the left and click send a greeting card. Follow the instructions and once you finish they will actually print the card you made for Alexis and deliver it to her room. Alexis is in room 5316

On July 28th, it had been one year since Alexis was diagnosed! I can't believe it has been that long already! Alexis and I both agreed that the time has gone by fast. I guess that is what happens when you cram so much in a small amount of time! When I think about everything that has happened it seems like 5 years worth.

So, like I said this is Alexis's last planned admission. After this, Alexis will have two more rounds of Retinoic Acid. Each round lasts for two weeks with two weeks in between. This means that we are looking at around the first week of October being the end of the Antibody Therapy Protocol. This will give the nurse practitioner approximately two weeks to complete all of the scans before our Make a Wish trip to Disney. The bad news that I found out last week was that Alexis will probably not be able to go swimming on our trip like we originally thought. Originally we thought Alexis would be able to have her broviac (a port in her chest) removed before the trip which would allow her to "be back to normal". However, the broviac can not be removed until after the scans are completed. There is a chance that the broviac can be removed before the trip, however it will have to heal for 2 weeks before she could swim. Faye our nurse practitioner did suggest pushing the date back. However, the trip is planned over Alexis's birthday and all of us are more than ready for the trip! I talked it over with Alexis and we decided that we probably wouldn't have much time to swim anyway-so we want to keep the date the same! If ALexis has to go to Disney with her broviac it is really no big deal. It would be nice to not have to worry about wrapping her for her bath, heparinizing her daily, changing her broviac patch weekly and toting all of the supplies required to do this though! Right now who knows what will happen! But whatever it is we will make the best out of it.

So far today, Alexis isn't doing to bad. She has mostly been very irritable and sassy and has had some stomach and neck pain. This morning she had to wake up at 7am. This is a big difference from her usual 9 or 10 am wake up schedule. Going bcak to school is going to be a rough transition for her. I do have some information about school but I will post more on that after I finalize a few things.

Well, Alexis wants me to lay with her so I will write more tomorrow. Thank you for all of your continued support. We couldn't have gotten through this without all of you.

Love,
Jen

Please make sure that you send Lexi a card via Nationwide Children's Hospital, the name is Alexis Howard and her room number is 5316. She loves getting cards.