Thursday, September 17, 2009

Stories for today...

Today was a very full day. Started out with at 4 a.m. with Jael wetting the bed and then again at 8 a.m. They are filling her so full of fluids all day/night that she can't control it. She even managed to have three accidents during the day while she was awake. I'm not sure if that is a bladder control problem or a regressing emotionally problem. Nonetheless, she has been in a pull-up for most of the day.

She started her final day of chemo at around 10 a.m. Well, technically it started with medicine to prep her for the chemo. Today she got a chemo drug called cisplatin (sp?) and its the worst that she gets. Most likely to make her throw up, lasts for 6 hours (the rest don't last for more than 1 hour), and requires a ridiculous amount of fluids in order to flush it out of her system as quickly as possible so it doesn't damage her bladder or kidneys. Scary stuff. So far she is doing good, but they say that this medicine will make a person sick 12 hours after up to 72 hours after she has it.

Late this afternoon our nurse mentioned that her head didn't look great. I kind of brushed the comment off at first. Then I looked at it and saw that one of her scars looked swollen and she had a knot of sorts on the bottom of her head. Of course my mind starts going to the worst possible scenario - regrowth of the tumor. It seemed like forever before the nurse practitioner finally came in. She said that it looked like maybe a slight infection on the wound and a swollen lymphnode below. Better than a tumor, but really don't want to deal with another infection. The doctor came and said that we will just watch to make sure that the swelling doesn't get bigger on either spot and look out for a fever. A fever will keep us in the hospital. So far so good. Someone from the neurosurgeons office is going to be coming by tomorrow to look and they mentioned the possibility that they would have to extract some fluid out to see what it is. Hoping that is not the case. My little girl (and her mama) needs to go home and see Heidi and Daddy. At the same time I do not want to go home and then have to rush back here because of a high fever. God give us wisdom.

I had a great opportunity to talk to two moms today. I don't know the names of the moms, but their sons are Jair (maybe 7) and Ray (3). We started to talk about our children's sicknesses. We cried together and encouraged one another. At one point I asked Ray's mom about his prognosis. She choked up and asked me to give her a few minutes and she would tell me. I took that opportunity to go and get the Target gift cards that we purchased using the money that was collected during Linda's Bible study classes. I explained why I was giving the cards and Ray's mom began to cry and hugged me. She told me that I was filling her with the Holy Spirit. She reluctantly took the gift card saying that she was going to pass it on to someone in greater need than herself. She then translated to Jair's mom who only speaks Spanish. She too began to cry and said that she needed it very much. It was just wonderful to be with other moms who are going through similar situations and be vulnerable to each other and support one another. Please keep both of these kids in your prayers. I'm not sure of Jair's prognosis. I didn't get all of the information about Ray's cancer, but he only has a 50% chance of survival. They are doing 5 rounds and they are only doing that much because they don't know what else to do for him. He has some sort of rare cancer. They have been here at the hospital almost constantly since April, going home just three times an average of 10 days each time.

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