August 30, 2008 (Saturday)

Well, there is no additional news on Gracie treatments or developments to report today. It really felt like today was pretty normal, except that it is hard to know what day of the week it really is. There were no tests to do or doctors to see. Days like today should be treasured but today we were anxious to get going and do things, like chemotherapy. That may sound bad but now that we know about the cancer we want to get to work killing it. I know there needs to be preparation and tests before chemotherapy but it is hard to just live life normally when you know what you need to do but have to wait for it.

For those of you who have been following the blog daily, two days ago I added a few pictures and some narratives on those pictures to previous posts. You can use the site navigation buttons on the page to see prior posts if you have not seen the pictures. I have also taken the liberty to correct spelling and grammatical errors in previous posts, of course this only occurred once they were pointed out to me. I will likely continue that practice in the future.

There was a question raised from the Wednesday (3 days ago) post. It seems that some interpreted what I said to mean that Dr. O and Dr. P saw two different things in their independent examinations. This is not what I meant nor what I think occurred. Rather they saw the same problems but had different treatment proposals for what they saw. There is no indication that Dr. O missed something Dr. P saw or vise versa. Both had the same diagnosis of bilateral blastoma, with several tumors in the right eye (one dangerously close to the optic nerve) and 2 in the right eye. I removed one sentence from the wednesday post to clear up the confusion but this does not change the content of the post for that day.

Another question that has been asked in various ways to us is how we feel about Dr. O now that Dr. P appears to have given a much more promising prognosis. I think this is a fair question and one that many people would ask in similar situations. As a follow up to that question is why would the two doctors give such different prognoses given that they saw the same thing. I will try to address those two questions.

First of all, we think that Dr. O is a wonderful doctor and look forward to working with her in the future. She comes highly recommended and has not disappointed. Importantly she was the one that insisted on us getting a second opinion to be sure of our decision and even set up the appointment with Dr. P's office. Remember too that retinoblastoma is rare and not seen that often. Dr. O likely sees a few cases throughout the year where Dr. P sees a new case every 2 weeks or so. Dr. P works in a larger center which has a multidisciplinary medical group that specifically focus on retinoblastoma. This group follows cases and studies the results from different treatments. So current knowledge of treatments is likely higher for Dr. P then for Dr. O. Even given all that Dr. P was not surprised and did not find Dr. O's recommendation (immediate removal of the right eye) unreasonable. She explained that their group's current protocol for treating bilateral retinoblastoma was to first start chemotherapy to reduce the size of tumors. Then if there was an eye where vision was unsalvageable, enucleation would be performed. So in following that protocol and based on her experience she gave that recommendation and gave as an opinion that an eye like Gracie's right eye had a 50% chance of being salvageable.

While talking with Dr. P she mentioned that if the disease was unilateral (only in one eye) and that one eye looked like Gracie's right eye, she would likely recommend immediate enucleation. Unilateral disease is more common for retinoblastoma patients and there are fewer complications when it comes to treatment when compared to bilateral. So it is not at all unreasonable for a doctor to recommend enucleation more often than not when an eye looks as bad as Gracie's right eye. Given all of these factors and our many positive experiences we are very pleased with Dr. O (and Dr. P). They have not brought us the best of news but have helped us out so much and we are very grateful.

Since I have spoken briefly about it, I will just mention some of the reasons why there are different treatments depending on the bilateral or unilateral condition. Firstly, bilateral retinoblastoma means that the child has a genetic mutation in every cell of the body and thus more likely to have cancer in the future than a child with unilateral retinoblastoma. Secondly, bilateral disease means that both eyes must be treated as opposed to one eye in the unilateral condition. So for a child with the unilateral disease, chemotherapy, radiation and other such treatments will not even be necessary if the cancer is surgically removed (this means the eye comes out too). In the bilateral disease, other treatment options must be employed anyway so enucleation is not necessarily the top of the list. Also any treatment to the eye could result in some visual impairment. In unilateral blastoma the non-cancerous eye will not be affected by treatments thus visual impairments are reduced considerably compared to children that require treatments in both eyes. So every effort is made to preserve whatever vision is in either eye in the bilateral case and minimize future visual difficulties.

I hope I was at least somewhat clear with that explanation. My family and I truly admire the medical professionals that we have been working with! They are amazing people and literally work miracles. We feel so blessed to have such good people that we can trust and find solutions for helping our little Gracie. Gracie has undoubtably been protected by a loving God. As I have said before it is miraculous that with so many tumors, the central visual centers remain unscathed. It is a miracle that we were able to find the tumor when we did (thanks to my wife and her keen awareness regarding Gracie's health). And it is a miracle that we have been cared for in such a timely manner over only a matter of days.

Thank you again for your prayers and for your thoughts.