Update on Gracie's treatment

Gracie has an appointment at the cancer clinic in Austin, TX tomorrow scheduled. We are planning to have a platelet transfusion done at that time. They will check her blood levels and see if anything else is needed. The last couple of days we have noticed increased bruising and Gracie has been a bit more tired than usual. We continue to hope and pray that all goes well with this last round of chemotherapy. She is actually going to miss all of her friends at the blood clinic and cancer clinic each month. She talks about them often and asks when she can go back to see them.

I just thought I would take a little space here and clarify where we are in Gracie's treatments. 10 days ago we spoke with Dr. P in Houston following Gracie's most recent EUA.

THE LEFT EYE

We were thrilled to find that Dr. P saw significant improvement in Gracie's left eye. There have always been two tumors in the left eye, one small and one medium sized. Dr. P reported that the small tumor was "flat." This means that the cancerous cells are likely all dead and the tumor will not grow again. The area where the tumor was is scarred but it has not affected her vision. The medium-sized tumor showed significant improvement, in that Dr. P noted the coloration of the tumor changing and some reduction in size. Dr. P feels that the laser treatments are finally working and should continue to work to flatten and kill this tumor. Should the laser treatments not work or the tumor start to increase in size we will have to consider other options. Laser treatments for these types of tumors are really the least invasive and have the fewest potential negative effects for Gracie. So, up to this point, we have only used laser treatments (shining laser directly at the tumor to kill cells) and the global chemotherapy (IV chemotherapy drugs each month that attack replicating cells throughout the body- which would include cancerous tumors) on the left eye. We will continue to monitor that eye on a monthly basis and use laser treatments until the medium-sized tumor is gone. We hope and pray that these treatments will be all that are needed.

While I can not give you an exhaustive list of treatments available, should the laser treatments not work, some of our options include:

Cyrotherapy- the use of extreme cold temperatures on the tumor to kill the cells. This would typically be done by getting access to the back of the eye and putting some sort of freezing agent on the back of the eye adjacent to tumor location.

Radiation plaques- a radioactive plaque would be placed on the back of the eye adjacent to the tumor location. This releases radiation to the concentrated area where it is placed and thus kills the cancerous cells.

Proton beam radiation- This is similar to laser treatments only using radiation instead of light and heat. Radiation is concentrated onto the tumors. Typical radiation effects a relatively large area around the target cells and has been shown to sometimes cause other cancers later in life for young retinoblastoma patients. Proton beam radiation results in less "fall out" for cells around the tumors and have shown great promise recently in treating patients. This technology is relatively new and not available everyone in the USA, however, Houston does do proton beam radiation.

Each of these treatments come with risks and benefits so will be considered carefully- if they are ever needed for Gracie. Dr. P does not do these three other treatments but has sent her patients to Dr. G in the past. We are fortunate that Dr. G will begin taking a leading role in Gracie's care sometime in the next couple of months. They are starting a new retinoblastoma center at the Texas Children's Hospital and Dr. G will be the head pediatric ocular oncologist. The timing seems perfect from our stand point and we have heard nothing but good things about Dr. G.

THE RIGHT EYE

Dr. P informed us that the right eye still has showed little to no improvement since the first time Dr. P looked at it. There remains large tumors on the retina and many vitreous seeds. While some of the seeds may have calcified (basically been killed) to some extent the tumors have neither grown or shrunk noticeably in the last 6 months. This is a bit of a quandary for everyone involved. There is a small chance that the tumors have stopped growing and will never grow again, given that no growth has been seen. If this is the case then the right eye can be monitored and left alone as it does not impact Gracie's vision. The seeds are not a huge problem in the short term but can cause problems and spread in the future (or they too could die and not ever be a problem). No one wants to remove her eye if the tumors are not growing and her vision is unimpaired but everyone wants to prevent the tumors from growing and leaving the eyes to cause bigger problems elsewhere. This brings many questions that we cannot answer until we see Dr. G and know what options we have. Dr. G is going to look at the right eye and let us know if there are any radiation treatments that are available that may help in her case. He will provide a his recommendations and then we will know what options are available. It is also important to see how the tumors progress over the next couple of months without monthly chemotherapy sessions. Whether the chemotherapy was stopping the tumors from growing or whether the tumors, in the right eye, had already stopped growing is unknown.

So basically we would love to see no future growth in the right eye and have to do no further treatments on that eye but to leave the tumors right where they are. This means regular (likely monthly) EUAs to check for growth. If no growth is seen then we would leave everything alone. If the tumors in the right eye ever start to grow then we will have to quickly decide how to proceed- radiation treatment, enucleation or some other option as yet undetermined. Because the tumors are so large and one is so near the optic nerve then it would be imperative to stop any further growth immediately. So our best option is that the tumors are dead in the right eye and we live month to month monitoring them to make sure they stay dead.

Gracie is doing remarkably well and we are blessed with the best family and friends that anyone would ever ask for. We have seen many little and big miracles throughout everything that has gone on and continue to hope and pray that Gracie will keep both her eyes. Thank you all for your continued love and support!