Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Monday, August 25, 2008



Waiting for Results

We will wait for results until our appointment on Wednesday afternoon. Tumor board will meet on Tuesday morning (they meet twice a month) and we like to wait until after they have met (and discussed the scans) to get the results. We really don't want "preliminary" results, so we wait. Usually, we try to schedule scans for the end of the week before tumor board meets, but this time we had to schedule it on Monday so we have a longer wait than normal.

It is hard to believe that the summer is just about gone. With just a little over a week until school starts back up, there are lots of things to do. We have registered Sarah in preschool, but we don't know yet what the schedule will be for that. If they don't have enough students, they will combine the 3's and 4's and it will meet Monday, Wednesday and Friday. If they do have enough for two classes, the 3's class (which is the one Sarah will be in) will meet Tuesdays and Thursdays. Hopefully, we'll know more this week. Also, we found out there is a parent's meeting at her school Tuesday night, so we want to attend that.

I started looking at both Rebekah and Sarah's shots to see what they needed for school or if they were up to date. They both got behind while Rebekah was in treatment and I've worked on getting them caught up, but thought that Rebekah was missing one series. Sure enough, she doesn't have her Hep A series. As it stands right now, she doesn't need it for school but she will in a few years. It doesn't hurt for her to get it, so I've got her scheduled to get that one on Thursday morning. She'll need the second one in the series after 6 months and then we might actually be able to answer the "are immunizations current?" question yes. We've had to answer it no for more than three years now.

We are still working on the speech device (Tango!). Insurance has said they are denying it (although I haven't seen a denial), so we'll need to be working on an appeal. Meanwhile, she is without it. Ugh! Please continue to pray for this.

We are looking at starting Rebekah on some medication to help with her attention span and impulsivity. It is an ADHD medication and we are hoping that it will help. Before we start her on it, we want to make sure it is safe for her. We have a couple of concerns with it. One is that it can suppress her appetite. This would not be good and may mean that she can't stay on it. The other is that it is not recommended for people with heart problems. Rebekah hasn't shown signs of heart problems, but one of the chemotherapy drugs she had can cause heart problems. She is monitored yearly for that, but we wonder if she shouldn't be monitored more frequently if she is on this medication. The heart related problem is a rare one, but a very serious one - it can cause death. The medication may or may not work, but we feel we should try it, if we can do so safely.

1 Shared:

At Tuesday, August 26, 2008 8:45:00 AM, Anonymous Bev Zimel Left a thought...

Just checking in and leaving good thoughts and prayers with you all. Prayers to you also for peaceful hearts during the days of waiting for the appointment next week. Take care and enjoy the last days of summer.
Hugs,
bz
P.S. I remember the shot thing with Lis...she didn't catch up on 12-year-old shots until she was 15!

 

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