8-29-06 Update

Hello everyone,

Valerie has her good days and her bad days. Some days she is in more pain than others. She has lost a lot of her strength in her hands. She can hardly hold on to forks and spoons to eat with. We use plastic ware now because it is lighter and easier for her. If I had to take a guess within a week we will have to start feeding her. She also has a heavy feeling in her chest now that makes her feel like she has to work a little harder to breath. We now have home oxygen for her to use when she feels she needs it. 2 lpm via nasal cannula right now. We have had times lately that her neck is hurting her and she can't get comfortable and then she get very upset. So with that in mind the Dr. has given her lorazepam to calm her when she needs it and they have also given her another pain medication - morphine 10mg sublingual (under her tongue) every 2-4 hours as needed. She still takes her other pain meds. This started yesterday. So I guess now we have everything we need to keep her comfortable. A few days ago she had nausea and vomiting, not sure why that stated all of a sudden. She has not had to deal with that much. So we also got a medication called prochlorperazine to help her with the nausea and vomiting. So far so good with that. I wish I could update good news but it seems now we have hit the time where there is not much good left without a miracle. So as always I will keep you posted as I can.

Thanks again for your continued concern.
Bernice

8-17-06 Update

Hello,

Well we went to Children's today. The tumors have grown, and are now all connected up the spine. They are about 2 inches away from the danger area. The area that will effect her breathing. She is having a lot of pain in her shoulders now along with the weakness. They told Valerie that their was no sense in continuing the IV chemo because it was going to make her sick and she has not had any signs of the tumor grow being slowed down. They gave her the option again to do nothing but treat her pain and symptoms OR to try another chemo pill form that would not make her as sick as the other would have if she had keep taking it. Another chemo that has worked for some with this type of cancer. She chose not to give up, so we are going to start the new chemo as soon as Walgreens get it in. We also increased the dose of her pain meds to help her. We also are going to start her on any anti-depressant medication. I know you must all be saying that will not take away the depression she has every right to feel. YES that is very true, however she has shut down to others and does not want to do things to have some enjoyment or go out of the house for much of anything. So this medication will be a helper. Kinda like a ladder in the deep end of the pool, you need it to get out but if the pool is empty you can not reach the ladder. So the medication will be the water way to the ladder. So I am hoping the medication will give her a boost, so she may have better quality of life.

As you all know if you have ever been or know someone who has been very ill, you see many different doctors. Some are like good cop/bad cop. Meaning some give you the glass is half empty response and some give you the glass is half full. Well anyway Valerie's two main doctors are that way, both great but their outlooks differ a bit. Valerie asked them both separately how much time they though she had before losing her arm function and breathing issues to begin. One told her any time now for the loss of her arm function and not far after the breathing problems. The other said I don't thing it is going to be like next week. He felt a month or two. So I guess we need to ask God for the answer to that one.

Valerie will not be returning to school. Going to school for the day is out of the question. We talked about home school, however Valerie's hands are weak and her hands shake. That makes it hard for her to write. She also can not read for very long before getting a headache. So school at this point is not an option. We would like to give our very best to all the teachers, staff and students at Thomas Stone High School for all their love devotion for Valerie for the past 7 months.

Thanks for your prayers,
Bernice

8-10-06 Update

Hello,

Valerie is doing really good with her new chemo, meaning she is not getting sick and her blood counts are still normal. This is her off week, then she will get her next treatment on Thursday the 17th. She had her MRI this past Tuesday. She had to be sedated for it because she cannot lay flat on her back anymore. The MRI went well, the sedation worked well. The worst part for her was not getting to eat for 10 hours before the MRI. We have not decided if we will call for results or just wait until Thursday. We don't expect it to be good news, so we might as well just wait. It was done more as a update on her prognosis, I think. Valerie is having more weakness in her hands. But she is still able to use her arms and hands for everything. The only other change with her is she is depressed now. I think she was in a denial stage for a long time and she is now moving through the stages of dealing with having a terminal illness. She is frustrated with her body. Her weight gain, feelings her body puts off that are different all day long. She said she can not read her body anymore, can't tell what the feelings are. You know, if she is hungry or she is having stomach cramps. Sometimes she has a tiny bit of feeling in her legs and other times she does not. That is all I have for now.

Thanks for your continued concern. I will update again when we get the results of her MRI.
Bernice