Tuesday, January 17, 2017
- Make A Wish: Thank you to our volunteers, Tiffany and Lisa, who helped make this happen. Thank you to Schahet hotels for raising money for Neve’s wish. Thank you to everyone who supported our journey with a gift to Make A Wish.
- Give Kids the World: What an amazing place. We are so grateful such a place exists to provide an amazing vacation to so many deserving kids and their families.
- The Potts Family: What a treat to spend a few hours with you all. We’ll never forget our Splash Mountain and Thunder Rail Road fun!
- The Williams Family: Was so great running into you. Thanks for the tips and for the friendly faces on our travels home. Not sure we would have made it on that plane without your help J
Wednesday, June 01, 2016
Last week we received some wonderful news. After Neve’s exam on Friday, May 27th, her doctor reported that her eye is the best he’s seen it in the recent past! The scleral buckling procedure is working and the retina is healing around all of the edges. It is not 100% as there is still fluid behind the retina, but the doctor indicated that it will just take some time for that fluid to reabsorb into the body. The pressure in her eye is back up to 12; anything over 8 is considered good. And more importantly there continues to be no active cancer, no new growth and no visible seeds. For the few days leading up to the procedure, Neve had been complaining of pain in her left eye (her good eye) so the doctors checked and were able to confirm that the left eye was clear and healthy. They also conducted a refracting exam on the lenses of both eyes, which indicated that they are both healthy with no need for glasses at this point. We go back again in about four weeks for another EUA and without any changes will move to every 2-3 months between exams.
It would be an understatement to say that we have had a huge weight lifted off of our shoulders. I sat in the waiting room and sobbed tears of immense joy. Overwhelmed with emotion, I savored every ounce. In all truthfulness, there have been three times during this journey where I’ve felt like I’ve been outside of my body. The first when she was diagnosed, the second when we learned the large tumor was responding to the Intra-arterial chemo and then after this appointment. We know we’ve been headed toward this direction for a few weeks, but we also knew there was only about a 70% chance of the buckling procedure working. So hearing the news that it was working and Neve’s eye was healing was pure music to our ears. For the first time in 10 months, we are able to breathe.
Someone asked us if Neve understands the good news…and we think she does. However, we’ve not let her carry the weight of her cancer. We’ve remained outwardly positive while praying for the best possible outcome. So while the good news brings many answered prayers, Neve just continues to embrace life. She is so very excited to start Kindergarten in the fall and this summer she will be busy with camps, swimming, dance, play dates and keeping up with her brothers. At her pre-K graduation last week, her teachers described her with three words that we think fit her to a T: Courageous, Spunky and Secure. If she’s mastered these at the age of four, we can’t wait to see what lies ahead for her.
Tuesday, May 24, 2016
This month has been focused on healing. Neve’s last EUA in early May showed initial signs of the procedure to seal the retina to the eye wall was working. The fluid was still present and the eye pressure was unfortunately back down to four. The doctors decided to let nature take its course and allow a few more weeks for the retina to continue to heal on its own. While we knew this procedure was one that has been around for many years, it is one that they’ve only conducted with one other child with retinoblastoma. So we are just taking this day by day and allowing the healing process to take its course.
The best news we received that day was the one remaining cancer seed was not visible during this EUA. She hasn’t had any chemotherapy since Feb and isn’t in active treatment according to her Oncologist. We have moved to seeing him every three months now. However, she hasn’t been diagnosed as cancer free. So she will continue to have regular EUA’s every 3-4 weeks and eventually those will be spaced out every 6 weeks, then 8 weeks, etc.
The time we’ve had together as a family this month has been very special. We’ve met with Make A Wish and are actively working on a wish for Neve. We’ve celebrated Mother’s day and many end of the school year activities. Tomorrow Neve is graduating from Pre-K at Beth-El Zedeck. This is a place that has become near and dear to us and has been Neve’s saving grace throughout her journey. We can never thank the teachers and families enough for everything they’ve done.
This past weekend we had an incredible time at the Indy Eleven Soccer Game. At the very last minute, we decided to head downtown and lucked into free tickets standing outside of the box office. The tickets were center field, second row. The young man who gave them to us used to play with several of the players on both teams over in Europe. He now is studying at a Christian University in Northern Indiana and travels to other countries teaching the word of God through soccer. The game itself was incredible and the Indy Eleven beat Minnesota who is the top-ranked team. After the game we thanked the person who gave us the tickets and shared Neve’s story. We were on cloud 9 and wanted him to realize the good deed he had done. He let us know he will pray for Neve and then took our kids down to the front row and called some of the players he knew over to meet them. He happened to have a Sharpie so the kids got their shirts signed. The looks on their faces were priceless. It was one of those moments where we wanted to stop time and breathe in every last drop of the goodness. On the drive home we were all in awe of what just happened. It was a moment of divine intervention. A phrase I’ve heard recently captures this evening perfectly. “It’s good when it’s like this- and it’s like this right now!”
Life is short. We all have stresses and hardships, whether big or small. I’ve heard from several of you over the past few months about the strength of our family. It means so much hearing that from you. But all we can say is we are just living in the moment, keeping positive thoughts, and placing our faith in the Lord.
We head back to Cincinnati on Friday for another EUA to see how the Retina is healing. We are praying for healing of the Retina, reduction of fluid in the eye, for the pressure to return to normal and for the cancer to go away and stay away. So while we pray for that, we focus our energy on moments of pure JOY because truly that is what matters most.
Thursday, April 21, 2016
We are back from Neve’s Scleral Buckling procedure and our girl was in really good spirits before and after the surgery. As we were the last scheduled case of the day, we ended up waiting longer than normal before they were able to start so Neve and Clay spent some of the time practicing her jumps!
It was nice for the nurses and the doctors to see the spunky side of her personality. We also realized that we’ve become such regulars at the hospital that there are a small team of nurses who know us and even if they aren’t on her case, they always stop by to say hello. One of my favorite moments was the waiting room receptionist giving us a high-five when we told her the progress Neve has made. Connie is one of those friendly faces who directs families on where to go meet with the doctors after the procedures and where to go to find their children post-op. These are the people who make a tough situation more tolerable. I share this to give you a sense of the amazing level of care at CCH. These little moments go such a long way.
Ok, back to the update. The surgery itself took longer than anticipated, so after it was done we spent quite a while with the doctor talking about how things went, and ultimately she was very pleased with the result. We found out that when the doctor started the procedure she noticed a significant amount of scar tissue as a result of all the cryotherapy (freezing) treatments, so she spent some time clearing that away to make room for healthy tissue to replace it. Once she got to the point of inserting the implant into the rear of Neve’s eye, she ran into some difficulty due to the positioning of the calcified tumor in relation to the eye muscle and the retina – this necessitated cutting through the eye muscle before being able to position and attach the implant, and then reattach the muscle. In the end, the Doctor was very pleased with the positioning. And, perhaps the best news of the day, Neve’s eye pressure is back up to 12! Since this retinal issue began, her pressure has ranged from zero to six, down to four and now back up to 12. It’s a good sign that her little body is fighting hard to fix itself! Our next step is to wait and see if the retina is able to reattach itself to the eye wall, creates a seal, and then see if the fluid reabsorbs into the vitreous.
The other fascinating part of our meeting with the doctor was learning what can and can’t be done b/c of the cancer. In a normal situation (where the patient does not have retinoblastoma) the doctor would have drained some of the fluid and gone in through the front of the eye to repair the retinal detachment. However, since Neve does have cancer, she couldn’t go that route due to the possibility of cancerous cells that may still be in the vitreous fluid escaping into Neve’s blood stream. And since we don’t know if the calcified tumor is still active or not the doctor also couldn’t remove the remainder of the tumor as that too would increase the risk of extraocular retinoblastoma (where the cancer spreads outside of the eye). Right now it is intraocular (contained within Neve’s right eye), and has a 98% cure rate! With extraocular retinoblastoma the survival rate drops to 50% and is not worth the risk. Apparently they are only a few years away from being able to determine the status of a calcified tumor like Neve has. In Neve’s scenario, if the doctors knew with 100% certainty that the eye no longer contained any cancerous cells then the dead tumor could be removed. I certainly hope for future families that they reach that point sooner than later!
Neve’s recovery from anesthesia was one of her best yet. She was resting peacefully when we went up to see her in the PACU. After about an hour she stirred and asked for some graham crackers and juice. Neve’s eye is patched and this will have to remain for about 24 hours. And, remember her Courage Wings that arrived with a stuffed Lion? Well, the lion, who is now named Courage, remained with her during the whole procedure so the doctor went ahead and patched the lion’s eye as well. Although Neve wasn’t so sure about Courage having a patch, it was just one more example of the level of care this hospital provides. So sweet.
Neve’s patch will come off this evening and then she’ll have a routine of eye drops and ointments to help her eye heal over the coming weeks. She will also have to wear a pink metal shield to protect her eye while sleeps, goes to school and plays soccer. They tried to find one for the lion too, but Neve got the last pink one J.
Our next trip back to Cincinnati is on May 2ndto get the sutures from her surgery removed. The doctors will be checking to see if the retina has begun to heal and reattach to the indented eye wall. If it looks like its working they will reinforce the repair with a laser to make the attachment stronger and hopefully permanent. Then we’ll give the eye some more time to heal and get back to normal before we have to get back onto her treatment.
We won’t lie, it’s been a long and sometimes exhausting 6 ½ months and we have had our down moments during this journey. The road has not been easy and we have hated some of the topics of conversation that we’ve had to have with our kids. However, we have all grown stronger as a result of this journey. But as we told our boys, it looks like the prayers, the positive energy and the goodness being put into the universe for Neve is working! So again, we thank you all for the continued love and help that you have been providing to Neve and to Us….we’re not sure we could have come this far without the support from our friends and family. And although the fight isn’t over, although there have been some setbacks, we feel that we are seeing tremendous results and heading in the right direction.
Finally, as Neve approaches kindergarten this Fall, likely the youngest kid in her class, we keep asking ourselves if she’s ready. But we believe that this journey has more than prepared her for what is to come. While she is working on mastering her sight words, the fact she can advocate for herself, in a hospital, to doctors and nurses about the anesthesia she wants, tells us she’s not only ready for kindergarten, but this girl is ready for whatever life will throw her. In so many ways, her strength sustains us. The quote we posted early on is so very fitting:
“And though she be but little, she is fierce!”
Tuesday, April 19, 2016
We aren’t really sure where the weeks have gone since our last update but it’s been full speed ahead. There’s no real reason for our lack of posting, other than we’ve had more family birthdays, Easter, another trip to Cincinnati and then a much-needed week of R&R in Florida.
Our last update left off right before Neve’s mid-March MRI and EUA. We traveled to Cincinnati on March 15th for her second MRI. Her first one was back in late September here in Indy before we met her Ohio medical team. Fortunately, this exam and recovery were fairly quick and we were out of the hospital by mid-afternoon. We went to the hotel and then ran some errands. We marveled as Neve was skipping through the store- a mere few hours after anesthesia. It made us realize how horrible she felt after all of those treatments last fall and she never complained. And it makes us realize how strong this little girl really is. We are learning so much from her as she navigates this entire experience.
The next day she had her EUA early in the morning. Similar to the day before, the exam moved along quickly. We were so pleased to learn the eye did increase in pressure from a zero last time to a six. The change in pressure indicated the eye is trying to heal itself. However, the retina was still damaged and the eye still had some cloudiness in it making it was difficult to see what was going on with the seeds. Since the pressure of the eye made progress, they decided to continue to let the eye heal and re-evaluate next steps during her next EUA on March 30th.
We then went down to the Oncology clinic to get the results from her MRI. The good news is that her brain and left eye are still clear. And it is incredible to see the before and after images showing the change in the large tumor in her right eye. The doctors are so pleased with the progress. And, as we discussed with her Oncologist, since she hasn’t had any chemotherapy since the beginning of February, she isn’t currently in active treatment and he doesn’t need to see her again until June. This was definitely music to our ears… although, at the same time, we still haven’t heard that she is cancer free. But we’ll take and celebrate this milestone!
In consultation with the team, we scheduled Neve for another EUA on March 30th. The time between these visits passed so quickly. We did a day-trip to Cincinnati on the 30thsince we only had an EUA and no appointments with her Oncologist. This EUA provided some answers as to what has been going on with her retina. Her body responded so quickly and favorably to the treatment methods. As the main tumor in her eye shrank and hardened, it pulled three small areas of the retina with it. With these three holes, fluid is constantly leaving the eye causing the pressure in her eye to drop back down to a four. At its current size, the eye is like a deflated kickball. The doctors are concerned that if we leave it this way and continue waiting to see if the retina will heal itself, the eye will atrophy. They suggested a procedure that has been around for a long time, called Scleral Buckling. They will insert a small sponge implant in the back of the eye that will push the eye wall back into the area of the retina that is detached and seal the holes. They are hopeful this will allow the fluid in the vitreous to reabsorb on its own and the eye pressure will return to normal. They’ve done this procedure on one other child with Retinoblastoma and think there is a 70% chance of success. We decided that is something worth trying if it will help her eye heal.
Specific to her cancer, they were able to get a better view of the seeds. Good news! They can only see one small seed that looks fuzzy. This is incredible progress compared to the hundreds she had in her eye when she was first diagnosed. They aren’t too worried about the seed. We will keep an eye on it as it may respond to the residual chemo in the eye. If it happens to touch the retina, then they will address it with Cryo and Freezing treatments. So we are really close to all of the cancer being gone. It’s very surreal to write those words! While we want to celebrate, we also are keeping our head down to keep focused on the next phase.
As we send this update it is the night before the sclera buckling procedure. The procedure will take about two hours and she will likely have an eye-patch for about 2-3 days. Then we go back on May 2nd to have the small stitches removed. We promise to provide a more timely update J. In the meantime, we ask for your continued prayers. We are praying for the cancer to go away and stay away, for this procedure to be successful and for her eye pressure to return to a more normal level.
The picture I’m sharing is of Neve playing soccer tonight in her Courage Wings. She received these as a gift from Cancer Free Kids - an organization helping to fight the fight and support researchers in finding a cure for cancer. These wings arrived on a stuffed Lion, but Neve has chosen to adopt them as her own. I think very fitting as we enter this new phase. I hope she let’s me borrow them!
Thursday, March 10, 2016
It’s been about two weeks since we traveled to Cincinnati for Neve’s EUA. As you’ll remember we were fairly anxious about a strip of seeds in the vitreous of the eye not attached to the main tumor. During this last visit we received bitter sweet news. We’ll start with the good news first. The cancer is responding tremendously to the chemo treatments!!! All of the previous cancerous seeds that had hardened (died) have been absorbed by the body and can’t even be seen in the eye any more. The doctors were VERY pleased with this progress. There are a few seeds still left in the eye- but very minimal compared to where it was.
Now the not so good news. The Doctors immediately noticed her retina has become partially detached as a side effect of the treatments. The means there is fluid in between the retina and the back of the eye and the pressure in the eye is really low. Basically, her eye has been through the ringer and is tired. There is a process where cells constantly flow into the eye to keep the pressure where it needs to be in the eye. This process has stopped working for Neve. The Doctors indicated that they really don’t know what will happen, but given the response so far, they decided to give her eye a rest and an opportunity to heal. They can’t guarantee that the retina will heal but are hopeful. So the only treatment Neve received that day was a slow-release steroid above the top eyelid into the eye to help reduce swelling until our next appointment.
We met up with Neve in the post-op recovery area. Our nurse was so wonderful. She was patient with Neve and helped provide all of the things Neve normally asks for- Apple Juice, Water, Gatorade, popsicle, and graham crackers. We knew things were looking up when Neve asked for a cheeseburger! We were so impressed with the anesthesiologist as well when he came back to check on Neve and to see if we had any questions before we left. So far, this has been the best post-procedure recovery yet.
After Neve was feeling better, we went down to the HemOc clinic to meet with our oncologist. As usual, there was a team of people that came in our room to meet with us. As you may remember, our Oncologist is the one that helps interpret everything from the other two teams of doctors and helps guide us on our path. It was very helpful to talk through where we’ve been, where we are, and where we’re headed. He reminded us that during our first conversation six months ago, we set out three goals in priority order. Goal #1- We cure the cancer. Goal #2- we focus on the best quality of life for Neve. Goal #3- We discuss cosmetics.
With this reminder, we are very close to accomplishing Goal #1. We need to keep Goals 2 and 3 at the forefront over the next six months. So at this point we are praying that the cancer goes away entirely and stays away and that her eye heals. Please feel free to join us in those prayers.
Since we’ve been home, it’s remarkable how great Neve has been feeling. It makes us realize how tough the other procedures really were on her body and yet she never complained. She’s back to skipping, she wakes up in a great mood, and she never mentions that the light in the room is too bright.
We aren’t quite sure what vision she has, if any, out of the right eye. Regardless, she’s not letting it slow her down as she’s really learning to adapt. She continues to amaze us. Just when we have moments of sadness about what life has dealt us, she does something so remarkable that washes away all the tears and fears. Last week she had her Crouching Tigers promotion ceremony where she chopped a board in half with a left-handed knife strike. The most amazing part is she’s right handed! It was one proud moment for mom and dad!
I know so many of you wonder how she is doing. Some of you send notes and cards and others may just want to give us our space. We completely understand. But we want you to know that her strength carries us through each and every day. She really is a fierce little girl! We knew it six months ago when this all started, but it’s incredible how much she’s grown and continues to fight the hard fight.
We head back next week for her six-month MRI and another Exam Under Anesthesia. We’re really hoping those final seeds are gone and the retina is showing progress toward healing. Thank you for your continued positive thoughts and prayers!
Sunday, February 21, 2016
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’.”