Update 6-15-06

Hello everyone,

I have more information. We went to the Doctors on Tuesday. Valerie's condition has deterioated. The last MRI we had showed that the tumors are growing very rapid. Faster than any grade 4 the Dr. has ever seen. They are wrapped around her spinal cord now in many areas through out her spine. As they get bigger it compresses the spinal cord. This can cause many problems for Valerie. From the bladder problems to being paralyzed or even able to breath on her own. Right now the effects she is having is leg pain and weakness that is increasing a little more each day. This is making it very hard for her to walk. She is also having the same bladder problems however as of yet they have not got any worse. She has been referred to The Charles County Hospice for her upcoming home health care. They will help us get a wheelchair for her and any other things she may need. I was given 3 options for the upcoming treatment for Valerie.
1) High dose chemo via IV, that would break her body down significantly and has a high risk of deadly infections that her body would not be able to fight. With this she would spend most of her time left in the Hospital, and it may not even effect the tumors at all because they have not responded to chemo at all.
2) A different low dose chemo that she takes at home and get another MRI in 20 days and see if it slowed them down at all. This chemo will drop her blood counts however not as severe as the IV chemo would. If the tumors responded to this chemo it would be worth the side effects and risks of the IV chemo.
3) Do nothing but treat her pain and keep her comfortable. Now this is the hard part. The Dr. said if it continues to grow at the speed it is now, she may only have a few weeks or few months left, depending what area of the spinal cord gets compressed. She has tumor at the level C3 in the spine and this is the most critical point. This area controls her ability to breath on her own.

Well, I was not ready to just give up on trying to slow or kill the tumors, so we picked the low does chemo at home. Valerie does not want to spend any more time in the hospital nor do I want her to spend her final days in the ICU. The Dr. also did suggest that we see if the Make A Wish Foundation was able to move up her trip. I am not sure if that is possible, due to the dates of cruise's they gave us before, I picked the first one. Valerie said she does not want to change her trip to anything else. She said she wants her cruise and she did not care if she was in a wheel chair. Let us all pray that she gets her trip with no more physical limitations. Or even better a MIRACLE, and the tumors respond to this chemo and start to die.

I am sorry if you know Valerie and me, and are finding out about this over the internet. But it is very hard for us and telling the story over and over gets hard. I will try and update as I can or have someone else do it so you all know how she is doing.

Thank you all for your care and concern for us.
Love,
Bernice

Update 6-7-06

Hello,

We have some changes as to the last update. Sorry, this happened the next day after the last update. I have been busy and did not have time to get a new update out. So this is dated back to Friday the 6/2/06

She is not going to get the bone biopsy right now. Her surgeon and oncology Dr. along with the radiologist that does needle biopsy had a meeting while looking at Valerie's MRI's and they came to the decision that the areas they were referring to as new, were to small to get a good biopsy. They did not want to put Valerie through that and not be able to get a answer. They are more leaning to the side of that these spots on her bones are caused by the radiation. This would be great and would heal on their own. So she has started back on the Temodar (chemo). All of her doctors are going out of the country for a brain tumor conference and will be gone for the next two weeks. This does worry me, because all the Drs. that know about her will not be in the clinic if we have any problems. And as they say the cat's away the mice will play.....

OK, that was last week. Over the weekend Valerie started having problems urinating, and weakness in her legs like she had before when we were taking her off the steroids. I called the on-call Dr. on Sunday and they gave us some ideas to try at home to see if it helped her and if it was not better by Tuesday she should be seen. Well of course it was not better. So we went in to see one of the other cancer Drs. in the clinic. Valerie was not happy to see a Dr. she did not know and was very unhappy when they told her they needed to cath her bladder, so they could make sure it got emptied. We also were sent for another MRI, to find the cause of the bladder and leg problems. This was done Tuesday night. Valerie was put back on the steroids. It is most likely that pressure in the spine is causing these problems.

Well, I keep getting more information to update before I can even get it to you. The Dr. that Valerie was seen by yesterday called and told us Valerie needs to come in to be seen again tomorrow (6/8/06). It is not good. The MRI yesterday shows the tumors have grown in the last two weeks. So this is what has caused her bladder and leg problems. So we will go in tomorrow and talk about what the next steps are. There may be some things we can do to relieve the pressure in the spine. We will be meeting with the Dr. from yesterday and her surgeon. Well I don't think I will be able to bring good news tomorrow but I will update again as soon as I can.

Thanks as always,
Bernice

6-2-06 Update

Hello again,

Well we went to Children's today to see what the results were for the CT"s and bone scans she had. They did not show any lesions on the other bones in her body. This is good, however it does not answer our question as to what the lesions are caused from on her bones in the spine. So this means she has to get a biopsy of one of the lesions in her bone. This will be done by needle and she will be awake for this, but she will have some sedation. This will be done while she is in the CT, so they can watch where the needle is going. It should be an in and out procedure unless she needs to stay for pain management. She then will start back on the Temodar (chemo). They do not want to start the chemo back until the biopsy is done because the chemo can effect the results of the biopsy. The biopsy will be done next week. We are also going to get a PET scan at NIH also. This might be able to tell us if the lesions are necrosis (dead tissue from radiation) or tumors. However Pet scans don't do as well with small tumors and can not tell us as much as the biopsy.

Well That is where we are right now, back to not knowing what is going on in her body. She is still handling it good, much better than me. That is good. We did get a medication to increase her appetite. I hope it works! She is getting skinny. That stresses me out daily, just trying to get her to eat. Thanks for your continued support. I will let you know how she came through the biopsy.

Thanks so much
Bernice