August 30th, 2006

Samantha had an MRI of her brain and spine done today. She has an appointment for a PET scan on friday morning. Tomorrow morning she will start her treatment so we expect to get the MRI results then. We will spend four hours at the clinic as it is our first day to start learning. We will spend time there every day from now until we leave to go home. If all goes well we will be spending about 21 days here. Please pray that she tolerates & responds to the medicine. Will update tomorrow and let you know how it went.
Love to all,
Audra, Kurt, Christopher, & Samantha

August 28, 2006

Samantha had her evaluation today at the Burzynski clinic. It was a long day for all of us but she did real well. We did a lot of talking with doctors and nurses, she had a physical and labs done. Her labs came back good enough to start treatment we are just waiting on the approval of the FDA (which is standard) and her MRI and she will be able to get going on it. We are hoping for a start date of thursday. From what we were told today she will be spending about 2 hours a day M-F in the clinic and about 45 minutes on Saturday and Sunday. These visits will consist of Kurt and I being taught how to access and flush her port how to change her medication bag (which she will carry in a back pack) and drawing labs. They will start out with a low dose of medication and work up depending on how she tolerates it. They will moniter her white counts and platelets 2 times per week and her potassium and sodium levels every 2 days. So far that is all we have been told. Looks like we will not have to be in the clinic at all tomorrow so we will try to find something fun to do for a while to keep her busy. We will update again when we get started. Pray that this is the answer for Samantha to have quality back in her life and ultimately be cured of this disease. Thank you for your continued love and support.
Love,
Audra, Kurt, Christopher, & Samantha

August 19, 2006

As Samantha's counts seem to be on their way up we have tentative plans to be on our way next Saturday. Samantha has her first appointment set at the clinic for Monday the 28th. We will be driving an RV there as flying at 36 weeks pregnant doesn't seem like such a good idea. Christopher will stay behind as he starts school this monday and we feel it is important for him to be with his peers (although it is very hard to leave him once again). We are fortunate to have the suppport of our families to help us through and meet some pretty specific needs at this time.
We are very hopeful that Samantha will respond to this treatment and she will come home stronger. We ask that you pray for her, that this is the answer, and for Christopher as he starts his new school year with his parents so far away. We thank you and as always appreciate so much all of you for your support & prayers.
With love,
Audra, Kurt, Christopher,& Samantha

August 14th, 2006

Sorry for the delay in the update but we have had a lot to process over the past week. It appears the MRI at St. Jude (which was much more extensive than the one done in Orlando) showed that Samantha's tumor is showing signs of growth. Although some areas have decreased in size there are several areas of concern as well. We have seen a significant change in her abilities and energy level and have decided that chemo therapy is doing more harm than good. In our research over the past 7 months we really haven't come accross anything that we can do other than try something a little different than the traditional treatment (that by the way has no hopes for a cure). We have gotten Samantha accepted into a clinic that has a more natural approach and has some successes in Brain Tumors. We know that this also is a risk and has it's own set of side effects but at this point there is no other choice, no better choice. We are waiting for her counts to come up which have once again been wiped out from her last round of chemo and then we hope to be on our way to getting our daughter the help she needs. We are asking for all your support and prayers as we enter into this next phase of treatment in hopes this is the answer to this terrible nightmare. Thank you all again for all you continue to do for us.
With love,
Audra, Kurt, Christopher, & Samantha

August 1, 2006

We are off to Arnold Palmer for the next three days for some additional testing. Samantha's neurologist in Orlando had set up a 72 hour EEG to try to get a better grip on the seizures and see if her other symptoms are in fact seizure activity. We were scheduled in October but they had a cancellation as of yesterday so we are off once again. She spent most of yesterday in the hospital here in Vero having her IV antibiotic that she needs every 28 days and waiting for a red blood transfussion that never happened (long story we won't bother getting into). We will have her rechecked in APH while we are there to make sure everything is really okay. Her seizures are still breaking through here and there, not as frequently as they were but still to much for us. She seems to be eating a little bit better which makes us feel better but still has a ways to go there as well.
She and Kurt are scheduled to leave for Memphis on Sunday. He refused to let me come along as we are getting to close to the baby's arrival and he would prefer not to have any more stress while in the air. She will have several doctors visits and an MRI while she is there.
Being that she has been having so many bad days she did have an MRI here last week that (according to the Neurosurgeon) has not shown much change. We are still waiting for the written report but he seemed to think the area in the brain stem appeared smaller and the thalamus remained the same, however they are watching an area there that they are not sure of. When the MRI is done at St. Jude I believe they will be doing more intense screening of that area. We are praying that it is just an effect of radiation and not any thing concerning.
Please keep the prayers alive for Samantha and the other children facing this terrible nightmare. We will update as soon as we have any news. Once again thank you all for your love & support.
Love,
Audra, Kurt, Christopher, & Samantha