EUA #9

Gracie is such a trooper.  It was fun to see her so happy for most of the day today.  We woke her and the other kids up early to go to Houston.  She had an EUA where we would meet with Dr. P and her new ocular oncologist, Dr. G (she calls him Dr. Gumballs).  We have heard great things about Dr. G and were excited for the transition, though we really enjoyed Dr. P and will miss her.  Anyway, we got there and they were ahead of schedule.  Gracie walked back with the medical team at about 11:30AM, 45 minutes before her scheduled appointment time.  We saw Dr. G and Dr. P afterwards for our usual "debriefing." 

The great news is that the new tumor found last week in the right eye was responding well to treatment and the two tumors in the left eye were doing fine (one is still flat or dead, while the other is slowly dying and importantly, it is not spreading).  However, there were a couple of new vitreous seeds in her right eye.  This would indicate new growth of tumors.  The large tumors near the optic nerve have not changed and Dr. P even said they were probably retinocytomas (old dead tumors) and may never grow, but there appeared to be two previously unseen tumors growing in the temporal (toward the outside of the head) part of the eye.  They were previously unseen because either they are brand new or they had been hidden by the numerous vitreous seeds in that area.  So Dr. G wants to see us again in 3 to 5 weeks and see if those are growing.  They are far from the optic nerve and so there is little risk of them spreading outside of the eye.  If they are seen to have grown in the next month, than that would mean that we need to take another course of action.

Since Dr. G does radiation for retinoblastoma patients we asked what options we had.  He told us that in Gracie's case the next best option is probably enucleation of the right eye.  Radiation carries many risks of future cancers and problems with development in and around the eye.  Since Gracie has little risk of losing vision in the left eye, Dr. G feels the best option is to not attempt radiation treatments and risk the associated problems by enucleation.  We asked some pointed questions regarding how this would happen and when, assuming the worst.  Dr. G told us that if there was tumor growth next month, he would recommend enucleation within a few weeks.  The enucleation would be more complicated than some, as Gracie's injections behind the eye, have left scarring in the tissue.  If Dr. G did the procedure Gracie would need to stay in Houston for a week after the surgery.

While it is not the news that we would have liked, we continue to hope and pray for good results in a month.  We would love to see no growth every month and thus preserve her eye.  Her vision is so good and the tumors are contained at present.  This makes thinking of enucleation hard.  However, we know the long-term risks of leaving tumors growing in her eye as well as the risks of radiation.  We are grateful to the care and support the medical staff have all given us.  We are grateful for their diligence and care in treating her.  We continue to pray that we will do what is best for Gracie.  We will do everything we can to protect her going forward.

Thank you all for your prayers and support.  We do really appreciate it and think that they have helped enormously!