March 13, 2006

Finally I get a chance to post! Chris and I are now fighting for blogging rights and he seems to be winning. Even though we have been home more, I seem to have less time than ever to blog. Part of the problem is our bedtime routine which forces me to the upstairs as soon as the girls go to bed. Eventually this will need to be corrected, along with about a million other things.

Today was a long, frustrating day. Leah and I went to Covenant this morning for a blood draw (port access). I knew her counts would be low so I decided to wait to find out what the results were before leaving. That way if we needed blood we could just remain there. Her hemoglobin was 8.0. In Iowa City they transfuse below 8.0, so our nurse Georgene, called Iowa City with the results and the request to please call right back. Two hours and a few phone calls later we still did not have the go-ahead to get blood. By this time Leah and I had gone to Target and then picked up Olive Garden for lunch to bring back. Finally when I talked to Mary in Iowa City it was obvious that somewhere along the line some communication broke down since I don't think she was aware how long we had been waiting for blood locally. I was rather insistent about her getting blood today instead of returning each day for an additional poke to check her levels. We finally had her blood transfusing by 1:15 and were gone a little after 3:30 this afternoon. We spent almost as much time getting blood at Covenant as we would have in Iowa City. However, we did get to leave and run errands and it is still MUCH more convenient than Iowa City. The nurses at Covenant, especially Georgene, who we see each time are soooo kind to Leah.

I am off of school this week for spring break although it does not feel very springy. Leah and I are still trying to find things to do. Part of the problem is that we are supposed to avoid germs since even a sniffle would cancel her surgery. Her counts are very low right now and we will start GCSF tonight and germs are everywhere. Unfortunately we have been hearing her complain about how bored she is for several days now. Even the suggestion of visiting someone is just not exciting enough. Leah is a wonderful shopper and that would be right up her alley, but we will probably have to wait to do some of those fun things.

As Chris mentioned he and I went to Bellevue on Friday. It was difficult to see the Reeds going through something that hits a little too close to home right now. They are a wonderful family and even asked about Leah and tried to reassure us about her upcoming surgery in the midst of their own sorrow.

On Saturday it was nice enough that I took the girls for a short stroller ride outside. We all enjoyed that and if they were not so heavy to push around we could have gone much further. I am miserably out of shape since my workouts seem to be taking a backseat to everything else going on.

Leah continues to feel well. She is tired out, but we hear her voice talking at us when we get up in the morning until we go to bed at night. The other night she was up at 2 AM to use the bathroom. While I was helping her she immediately starts in with, "Tina....tomorrow we need to fix Chloe's dresser drawers. I think Grandma Karen is a little confoos-ed. She has her pajamas in her shirt drawer." Her brain is working constantly. So, the next morning when they got up Leah decided that Chloe should be big and wear underwear (which was what was occupying the one pajama drawer). Chloe has been doing some work on potty training and even brings up on her own when she needs to go. If I were paying attention more I think she could be trained. She has even pooped in the stool several times now after telling us she needs to.

Surgery is fast approaching and our prayer list is long. We ask that you pray for her scan on the 24th to go well and show a shrinking tumor yet again. We recently have been made aware of a child in Iowa City whose tumor has grown and shrunk at different points during chemo. and the thought that that is even a possibility is frightening. We also ask that you pray for her surgery on the 29th to be successful. The doctors have discussed several times that surgery is the cornerstone of her treatment--but the surgeons will need 100% resection of her tumor, so please, please pray for the surgeons to get all of her tumor, the spots in her lung, and that they find nothing else suspicious as well. Please pray for her continued good health, a fast recovery, and for her to be brave as they place an NG tube in her on the 28th.

Before I post tonight, Leah has asked if she could type for you, too:

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ghj hcbhbjghutyutjinjfgudihuthutyuytthjugfyfghgyfLEAHCHLOECHRISTINARISTAU