Lexi update

I finally got to spend some time with Lexi, her little brother Aaron and her parents last night. I have really missed them all a lot. Aaron is funnier than ever. I swear that he never stopped talking the whole time they were visiting. Lexi was a little shy, but I had some new daycare kiddos at my house that she doesn't know. She did open up a little with one of the older boys, "JS", but she knows him. I really didn't get to talk to her much because bless Aaron, he is such a funny fellow. I am sure that he keeps them all in stitches. Lexi is looking wonderful, with the weight she has gained back. We got to exchange Christmas gifts (which I never got theirs wrapped up) and they got me a really cute frame to put a picture of the doggies in. It was perfect for me. I can not wait until they get to come back so that I can see their smiling faces more often.

So, here is the latest update on Lexi, from her mom.

Thursday, January 14, 2010 9:38 PM, EST

Hello Everyone,

Our busy week is finally over and Alexis and I are exhausted! For the last three days, Alexis and I were at the hospital by 8:30am and did not arrive home until 6pm each day. Each day Alexis fell asleep on the way there and on the way home! Monday was a short day. We arrived to the hospital at 11:30am and arrived home at 6pm after picking up Aaron from Lexington.

Throughout the past 4 days, Alexis had 14 total appointment

s. On Monday, she had to be sedated for a bone marrow aspiration. The last time she had this done her bone marrow was cancer free so we are hoping for the same result! On Tuesday she had 6 appointments. Alexis had to have a renal scan which she absolutley hated, because they had to insert a needle to put in an injection. Afterward we went to the BMT day hospital for them to draw blood every half hour for 2 hours for the renal scan. The BMT nurses also drew 50ml's of blood to check ALexis for everything under the sun (Hepatitis, HIV, etc). While we were there the BMT nurse talked to us briefly about the extremely strict rules when Alexis has her transplant. When Alexis is admitted for the transplant this nurse will be teaching the orientation to tell us all of the rules! Some of the rules are that only 6 visitors, including parents are allowed to visit the entire time she is hospitalized for the transplant, all visitors must wear gloves and masks when in her room, everything must be wiped down with disinfectant before entering her room, etc. It is definitely going to be a long hospital stay!

On Wednesday, we had 4 appointments. During her Audiology exam we learned that there has been a decline in her hearing ability due to the chemo medicines. Right now Alexis can still hear at 4000 dcb and it is not effecting her speech, however the audiologist expects for her hearing to continue the decline with the high doses of chemo. If it does she will most likely require hearing aides. This breaks my heart, but we decided it is no different than the inconvenience in wearing eyeglasses! The inconvenience is better than the alternative. At her dental eval, her teeth look great. We had to schedule another appointment next week to have sealants put on her 6 year molars.

On Thursday, Alexis had 3 appointments. One of the appointments was tge dreaded CT scan. This is the scan where she has to drink contract mixed with a drink. After 5 times we have learned that Alexis's preferred drink is flat sprite, however she still had issues drinking it. It actually took about an hour and a half longer than it was suppose to, to drink it! After the radiologist told her that if she did not drink it she would have the nurse put a tube in her nose she decided to drink it (most of it anyway). This is the most important test. This test will do a few things for us. First it will tell our surgeon, Dr. Aldrink if her fluid issue in her stomach has healed. If it has, she will no longer have to take the octreotide injections 2 times per day!! We can't wait till this is discontinued! Second, it will tell us just how many cancer cells are left in her body!

Today we were suppose to have a consult meeting with the transplant team. However, the BMT doctor had a family emergency and it had to be cancelled. I think it is going to be rescheduled for next Thursday, but we are not sure yet. We feel like we have been in limbo as far as the tranplant goes, so we can't wait to thave this meeting.

Every department we went to has been in a small uproar about my insurance agency changing effective 1/1/10. It would not be so bad however, at this point in time I only have a group number and not a policy number. Last week, out BMT coordinator asked if she could work on getting my policy number. She contacted my new insurance agencies transplant team and they have been wonderful contacting the appropriate people in order to have me enrolled in the system by tomorrow (that is the plan anyway)! What I love about the every department I have dealt with whether the hospital( all departments), insurance, BCMH public health nurse etc, they all recognize that we have a lot going on and they bend over backwards to do as much of the leg work as possible to make it as easy as possible for us! Again we are truly grateful for all of the systems put in place to help families in situations like ours.

Well again, I wrote more than I anticipated I would. Lousie and Wendy, if you are reading this, it was great to hear from both of you!

Take Care,
Jen