We know it’s been a while since we’ve updated the blog. Thanks to so many of you who have reached out to check in on us and even helped out with meals and baskets. Since the beginning of this year I feel like it’s been full speed ahead. We’ve been to Cincinnati five different times, battled the stomach flu, celebrated birthdays and even fit in a few days in New York, just adults. We are finally catching our breath just in time to gear up for the next phase of Neve’s treatments.
Neve had four treatments in Jan/early Feb; two Exams Under Anesthesia (EUA’s) which included Cryotheraphy (freezing of the outer layers of her eye) and Intraocular Chemotherapy Injections as well as two rounds of Intra Arterial Chemotherapy (IAC). The good news is the tumor in her right eye has responded tremendously to the IAC, so well that at this point in time, the Doctors believe we have completed those treatments and the large body of the tumor is no longer viable. It’s a relief to have that news and while our medical team is confident of this decision, in the back of our minds we are prepared if they tell us she needs additional IAC treatments down the road. We won’t really know for sure until we have her next EUA (this week) and her next MRI in March.
You might be wondering if there is bad news. I wouldn’t say it is bad, but we’ve run into another hurdle. During her Jan 27th EUA, the Ophthalmologists identified a clumping of seeds in the jelly of the eye that has not responded to the Chemo. Looking at the picture of her eye, so many of the seeds have turned shiny, almost like tiny stars in her eye, which is a good thing. Basically, those cancer cells are dead and no longer viable and will eventually be absorbed by the body. However, the area of seeds that have clumped together are floating in the jelly of the eye and not attached to the retina and in pictures appear fuzzy, not shiny. So during this EUA they did both cryotherapy plus seven injections of chemotherapy directly into the eye to target the area of still viable tumor. This was the most aggressive treatment of this kind so far. They warned us that Neve’s eye would painful and feel very raw. What is so fascinating is that this intraocular injection is a treatment that is very new. It’s only been used in the US for about a year. With every case being different, they have to make the best judgment call they can about the right path forward. So, the plan is that Neve will now be receiving these injections directly into her eye about every 2-3 weeks for three to four treatments.
We’ve spent the past several weeks politely and regularly following up with our Oncologist and Ophthalmologists offices to determine when these will start. During this time we also noticed Neve had been complaining of her eye hurting more often. And at one point her eyelid was starting to swell again. After calling her Ophthalmologists, they determined that it would be best to see Neve in person. So we dropped everything last Monday and made a quick trip to Cincinnati. While it wasn’t in the plans, it actually was the best thing that could have happened. Neve got to meet with her Doctors in their office, which meant no eye-drops and no anesthesia. And of course Neve was her spunky little self, which won over everyone in the office. Thankfully, the swelling was not an indication of the eye itself swelling or of infection. It’s just still healing from the aggressive treatment she had a few weeks earlier. The other good news is we got to look the Doctor in the eye and talk about the next steps going forward. She confirmed no more IAC treatments, just Cryo and intraocular injections. We then talked to the scheduler who confirmed the next treatment dates (2/24 and 3/16). We also mapped out when the next few treatments will be and it looks like it will take us into the end of April.
It feels really good to know the path ahead. We do have some level of anxiety knowing this clumping of seeds is a problem. We are racing against time as it could create a new, larger tumor or move to the front of the eye and then spread elsewhere in the body. This Wednesday we will know how well the January 27th treatment worked.
So much of this year has been about positive thinking. Every day I drive the boys to school and ask them to have a positive thought of the day. At first they replied, “I hope I have a good day.” The past few weeks it’s turned into “I hope Nevie’s eye cancer goes away”. They love their little sister so very much and take pride knowing that Neve needs them to block the light when she gets her eye drops 3-4 times a day.
Neve has been talking to me a lot about God. Every night when we say our prayers she always says she loves God. I told her once that there are so many people out there praying for her. She smiled so big and now she says a prayer every night for everyone in the whole world. I have heard from so many of you who have added her to your prayers. And your family members are praying and your parishes and congregations. Please know we feel it and Neve feels so good knowing people are praying for her.
You have all been such a great support to us and it means so much….we are grateful. Please keep praying. We are close but we haven’t crossed that finish line yet. The picture I’m including is one of Neve and pure JOY. She’s a happy girl and genuinely skips into school every day. I encourage you to try it. It really feels good to skip. Especially when you get to hold this four year old’s hand and sing: “Skip, Skip, Skip to my Lou. Skip to my Lou my darlin’.”
No comments:
Post a Comment