December 29, 2006

We apologize for the delay in updating. Samantha has had a significant decline since our last update and is now under the care of hospice. She continues to fight and amaze us with her strength.
Last thursday she really had a terrible day. She was having continuous seizures, elevated heart rate and trouble breathing. She had also been spiking fevers and was unable to walk, talk, and was having difficulty swallowing. With the help of her VNA nurse and pediatrician (who we will be forever grateful to) we tried our best to get her comfortable but nothing we did seemed to work for her. Eventually we asked to have hospice come in and within a few hours they had a doctor and a team of people here to try and help the situation. After a few hours things were under control and Samantha was calm. It was a horrible experience and we hope never to go down that road again. Samantha has come around some and is doing a little bit better. Please continue to pray for her strength to keep fighting as we are looking into yet another treatment for her.

We hope you all had a good holiday and want to thank the many people who made Christmas for our family with all the visits, cards, gifts, meals, and treats during the past few weeks. So many people have touched our hearts with their love, concern, and generousity we don't even know where to begin to show our gratitude. Thank you all again and Happy New Year to you and your families.
With Love & Hope,
Audra, Kurt, Christopher, Samantha, & Jason

December 14, 2006

We have had quite a few rough days this week. Samantha was having a lot of trouble walking. She was complaining of dizziness, blurred vision and upset stomach. Hoping we could come up with answers other than disease progression for these symptoms we forwarded her PET/CT scan to her neuro surgeon who confirmed our suspicions that her ventricles were now draining to much. They said they were almost non existant which would certainly cause the symptoms she has been experiencing. They can not promise that it will fix all her symptoms but they did think she would be feeling/doing better in a day or so. We pray for that too.

We also received some very heart breaking news about the passing of our little friend Colby Steigerwald. Colby was only 5 years old and he battled this horrible disease for 10 long months. He was such a brave little boy who will remain in our hearts forever. We ask that you say a prayer for him and his family, some of the nicest people we have ever met who we hold very dear to us. No parent should have to endure this pain.
Please continue to pray for all the families and children that are going through this battle.
With love & hope,
Audra, Kurt, Christopher, Samantha, & Jason

December 10, 2006

As we suspected Samantha's PET results showed significant tumor progression. She has officially been taken off antineoplastons as of today. We have started her on some additional supplements and at the suggestion of Dr. Burzynski will be doing some additional labs to see if she has any abnormalities with her gene expression. If these labs come back with any elevations they have another step as far as therapy for her. If they come back normal we currently do not have anywhere to turn right now. We are, as always, researching every possibility with the hopes of finding something that may help our daughter. Please send extra prayers her way, we are really in need of them. Thanks so much for all your love & support.
With hope,
Audra, Kurt, Christopher, Samantha, & Jason

December 5, 2006

Samantha's PET scan is scheduled for tomorrow afternoon. We need your prayers as these results will determine so much for Samantha and our continued fight against this dreadful disease. Thank you for your support. We will update as soon as we have answers. Please keep those prayers alive!!
With Hope,
Audra, Kurt, Christopher, Samantha, & Jason

December 3, 2006

We have received the official report from Dr. B. He seems to think that what they are seeing could possibly be radaition necrosis (dead cells). He has ordered a PET scan which determines what cells are actually active. We are trying to get that done sometime this week. Apparently the effects of radiation can be seen months, even years later. We have put our faith in Dr. Burzynski and are praying that he is right.
Samantha is back on her treatment and we hope to be moving forward every few days to get her to her maximum dose. She is feeling pretty good. She is very tired but always happy. Kurt and I continue to do all we can to keep that smile on her face. The rest, unfortunately is out of our hands. Please continue to pray for Samantha and the knowledge of Dr. Burzynski and all that are treating her. As always we thank you all for your continued love and support as we travel down this path with Samantha.
With love & HOPE,
Audra, Kurt, Christopher, Samantha, & Jason

December 1, 2006

We apologize for not updating sooner but we are still waiting on the final MRI report from Dr. Burzynski. According to our radiologist as well as Houston's Samantha's MRI results were not very good. Apparently there is new growth and progression in the other areas. We were really expecting to hear something a lot better than that as she seems to be doing better the past week and a half. I guess we didn't realize how much the hydrocephillis was bringing her down.
We should hear from Dr. B today weather or not he sees any response to this therapy or if he feels it is just not going to help her. She has had quite a few interruptions from treatment that past six weeks with her two hospital stays and a rash she had. We think he may take that into consideration along with the fact that she has yet to make it to the dose she needs to be at.
We are once again researching other avenues but there really isn't much out there. These decisions are the hardest to ever be faced with. We just pray that we are led in the right direction for our little princess. Thank you for all your prayers, we will let you know as soon as we hear from Dr. B.
Love,
Audra, Kurt, Christopher, Samantha, & Jason.