The week of October 26th saw us road tripping to Cincinnati twice….once for Neve’s EUA (Exam Under Anesthesia) which was done on the morning of October 27th and then for her second round of chemotherapy on October 29th. Our first trip of the week was uneventful and we were able to stay with friends in Cincy who also have a 4 year old daughter. Of course the girls became fast friends and wanted to play and even though it was 9 pm we let them stay up for a while since they were having so much fun. We are so very thankful that Neve has a new friend and something fun to look forward to when we go to Cincinnati. It’s now more than the place of doctors, hospitals, eye drops, anesthesia, needles, chemotherapy, feeling lousy and throwing up.
Each time we go to Cincinnati there will be two days of appointments. The first day will be her EUA, during which the Ophthalmologist team will evaluate how the tumor is responding, how her eye is and what the best next steps should be. Assuming all goes well on day one, then the second day is her Intra-Arterial Chemotherapy.
For this month, the good news was that her EUA went well and the Doctors reported that her tumor did respond to the chemo. However, they would have like to have seen it respond more than it did. The Ophthalmologist had expected a more dramatic reduction in size after the first round of chemo. While there wasn’t as much progress as they would have liked, there was still progress in the right direction. It was also during her EUA that the doctor performed the first round of cryotherapy (freezing part of her eye) in preparation for her upcoming November treatment. The cryotherapy will help during the next EUA where, in addition to checking her eye and measuring the tumor, her doctor will also be injecting chemo drugs directly into her eye to attack the vitreous seeds floating in her eye which, unfortunately, do not respond to the intra-arterial chemotherapy.
After the EUA, we had an appointment with the Oncologist team to talk through Neve’s response to her first treatment and ways we could try to be more proactive in addressing the severe swelling she experienced in her eye. Neve was still drowsy and sleepy after her anesthesia and we actually thought that she was asleep at one point. One of the Doctors asked us a question, which we answered, however, right on cue Neve spoke up and corrected us all while keeping her eyes closed. (I wonder where she gets that from J) She didn’t miss a beat.
During this appointment, we also found out that Neve’s Chemo had been switched from Wednesday afternoon, which is what we were planning, to Thursday morning (with a 6 amhospital check-in). Of course we rearranged everything to make it happen as a morning appointment is more favorable since it means less time for her not being allowed to eat. All in all it was a positive, but long day. We headed back home to Indy around 2 pm, picked up the boys and enjoyed a quiet night at home together.
In preparation for her Thursday appointment (and 6am check in) we decided to head to Cincy on Wednesday night and stay close to campus. We are getting to know our way around the hospital and felt like pros this time knowing where to park, where to go, the check in process, and what to expect with all of the questions we get asked over and over again, the different nurses, doctors, waiting rooms etc.
While we were walking her back to the OR with the nurses, we were disappointed to find out that we would not be able to go back into the operating room with her and help her fall asleep. That was tough, but we knew we had to stay strong so she would stay strong. And boy did she. It was difficulty to watch her get wheeled back into the operating room, not being with her as she fell asleep, but what we’ve learned about this precious girl is that even though she may not want to do something and even though she may be scared, she digs deep and puts on her brave face and does what is expected of her. Her strength is incredible.
After we said goodbye, and wiped a tear away, we headed down to get some breakfast and check in with family. We were smarter this time and came prepared with some amazing juice and healthy food from our dear friend, Beth Smith (Beth owns a wonderful company called Simplicity. And yes, this is a plug for them because the juices, Betty bars and food she made enabled us to eat healthy and maintain a good level of energy throughout the day. Thank you Beth and everyone at Simplicity!)
During breakfast we received a call from Neve’s Doctor, which was very concerning as he was supposed to be in the OR. Everything was fine; he spent some extra time reviewing her case and just wanted to clarify that we were on the same page about a component of her procedure. While his call was not expected, it gave us some peace knowing he was taking extra time to make sure the right plan of action was in place for her.
The next 3 hours were spent in the general waiting room; thank goodness for iphones, people magazines and people watching. Around 11am we were notified that her Chemo was complete and delivery took 27 minutes. We talked to the Doctor at noon who gave a great report on how everything went and then headed up to the PICU floor to wait for her….this space was much calmer and we didn’t realize how much we needed some peace and quiet or how hungry we were. Again, thank goodness for packing food and being prepared…the things you learn.
By 1:00 we were with Neve for her four hours of sedation and recovery in the PICU. The doctors had ordered more fluids so she would be more hydrated when she woke up, which they hoped would help reduce her nausea. Around 4pmthey also administered anti-nausea medicine. Her sedation was stopped at 5 pm and we decided not to force her awake, but to just let her wake as she was ready. We talked to her and held her hand and she would nod her head, but she didn’t really open her eyes until after 6:30 pm. Before they would release her the nurses said she would need to keep food down and go potty. Around 7 pm, we knew she was feeling better when she was asking for a cheeseburger and decided that not only was she going to be Elsa for Halloween, but Mommy would also be Elsa and Daddy would be Hans.
We started food slowly with saltines, graham crackers, apple juice and popsicles. She did end up getting sick a few times, but it was much better being in the hospital and not in a hotel. The level of care and attention in the PICU was amazing.
It really took her about two hours to feel somewhat normal. We had been at the hospital since 5:45am and it was now after 9:30pm, but we decided we’d like to get her home. We would all feel better sleeping in our own beds, even though it was a 2 hour drive. Well, we’ve come to learn that nothing is quick during discharge and we walked out of the hospital at 11:15 pm.
The next day we all spent time recovering and catching up on sleep. We were so happy to see the boys after school on Friday as they were to see us and their little sister. Being the day before Halloween our goal was to have Neve rested and her energy level back up so she could go trick or treating on Saturday. And that she did. We attempted to have her ride in a wagon, but it wasn’t fast enough for her. So out she jumped and raced to keep up with her brothers and cousins, with Mom, Dad and grandparents in tow.
Truthfully, her ability to bounce back to normal is what helps us get through. Spending time with her between appointments keeps us strong. While we have our own moments of weakness, Neve’s attitude is incredible and inspiring. She tells us how she’s feeling and reminds us when she needs her next round of eye drops.
We know it’s been a while since we’ve posted. But truthfully, we’ve been enjoying time with family, carrying on about our normal days and enjoying all the meals, baskets, notes, prayers and outreach from so many of you.
We are gearing up for another round of the EUA and Chemo the week of Thanksgiving. While we aren’t feeling very festive, there are so many things for which we are thankful. I suppose for the first time in a long time, we are truly approaching this holiday with a thankful mindset.
We will do our best to provide a timelier update. In the meantime, Happy Thanksgiving to all of you. We know many of you are saying prayers for Neve and our family. We will keep you all in our prayers of thanks. Your generosity is so uplifting. Thank You!
