Tuesday, July 19, 2011

Today was a long day at the Burzynski clinic. The appointment was first thing in the morning and ended as they left the clinic around 5:00.
Before I go any further I need to explain that while at MD Anderson last week, doctors found that Rob's arm had an infection. They removed a tissue sample that should have results available tomorrow. Assuming the infection was there and treatable, doctors put Rob on a regimen of medicine to get rid of it. They also wanted to start Chemotherapy immediately and, in fact, came to his room ready to begin last Friday, but were turned away.

At Burzynski today, Amber walked into the office pushing Rob in his wheelchair and pulling his oxygen tank, anxious and excited to hear something new. Doctors discussed their options based on Rob's history and paperwork. Chemotherapy along with some alternative formulas is what they would like to try on Robi. They have some great treatments for cancer but not sure what Robi will respond to. They decided to collect blood and test it in order to find out what formula they should use. It will take about 3-4 weeks to those results. It was after about 2-3 hours that one of the doctors looked at Robi's arm. He too diagnosed his arm with having an infection. They advised Rob to go back to MD Anderson Emergency Room and get his arm infection treated, then return to Burzynski for treatment and chemo. At MD Anderson the staff said that treating the infection and having chemotherapy was fine to do at the same time. Burzynski insisted that the two treatments (infection and chemo) canNOT be done at the same time. This illustrates an excellent point - Everywhere they go to find answers, the doctors contradict each other. They want to believe all of them but what do they do when the doctors flat out oppose each other? All of the doctors are doing their best and Robi's case is extremely rare. There is no blame or frustration toward the doctors themselves, just frustrating that there isn't any clear answers. One doctor says that Ipt (form of treatment that is only 10% chemo and doesn't affect healthy cells) works great for aggressive cancer while the other says it doesn't work at all. So, to take a very long day and condense it into a very small post, today wasn't what we had hoped for but maybe in the future it will be a resource that will be able to use. Right now 3-4 weeks for results is way too long to wait.

That leaves us with 2 choices, MD Anderson and the alternative care in Phoenix. Both are great options. Amber has done everything she can to learn and interview with doctors around the United States and Mexico. She is having a really hard time deciding where to go. More chemo to his already very weak and suffering body that didn't help the first 3 times? Try alternative care that will help him feel better but may not be aggressive enough to help?

One thing we have decided is that Robi needs his daughters. He is very homesick for them and his depression isn't helping matters. His little girls bring excitement and joy into his life. He not only misses them but he truly NEEDS them around. He is a fairytale father whose life revolves around his family. I will always have a picture in my mind of once when I saw Rob teaching Joslyn how to fish. He was leaning over her shoulder and teaching her all the tricks. She was interested but not quite as much as he was. After a few minutes of patiently waiting for a bite, Joslyn seemed a little bored so Robi was prepared. He brought a net along with him and within a few minutes they were chasing fish around and catching them in the net. That was much more exciting for Joslyn! Keep in mind, she has since taken after her father and become a little fishergirl. Being apart this long is too hard. From now on, 4 days is the magic number. Any longer than that- they will travel with him or he will receive treatment at home.

Tonight, please Pray for Amber to have clarity of mind. That she will be able to make the decision that is right for them at this time. Pray that both of them will feel peace in their decision and pray that the doctors will be inspired as they treat him...

1 comment:

  1. I have not had the opportunity to meet your sweet family but have heard so much about you guys. I am friend's with Veronica Nelson. You have such amazing hope and strength. My family will be praying for yours tonight. Hope to get to meet you soon.