It's good when it's like this- and it's like this right now

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. 

She's got Courage!

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 2^ndto 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!” 

Courage Wings

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 15^th 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 30^th.  

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 30^th.  The time between these visits passed so quickly.   We did a day-trip to Cincinnati on the 30^thsince 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 2^nd 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!

Left-handed knife strike for a right-handed girl

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!

Skip to my Lou

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 27^th 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 27^th 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’.”

Making more progress!

We traveled to Cincinnati again last week for Neve's fourth round of treatments.  Coming off a great report in November we were hopeful for more good news, but in all truthfulness, we were also preparing ourselves in the event the tumor didn’t respond as well.     The morning of her EUA, we had one of those mornings.  You know, the kind where nothing seems to go your way?  Nothing major happened, by any means, but random things just kept happening to us.  We both had a level of anxiousness, but certainly didn’t want Neve to catch on to it.  (Fortunately, she had lots of giggles the night before with her new bestie in Ohio.)  

 

We’ve started this tradition where we try not to eat or drink before her procedures because we feel it isn’t fair to her if we eat or drink in front of her.  However, being the second case of the day, things were running behind.  So we weren’t able to see Neve off until 11:30 am, an hour after her start time.  The theme of the day was hangry.  By the time we left her, our hangry had settled in and little did we know Neve’s version of hangry would come back to haunt us.  (More on that in a bit).

Fortunately, once we said our “see you soons” to her, we were able to have lunch and calm down a bit. Our primary Ophthalmologist was ready with a report only 45 minutes later.  He was very optimistic indicating there is continued improvement with the tumor showing reduction and the seeds floating in her eye are now turning shiny.  Apparently this is the goal.  A few of the seeds still appeared fuzzy so his partner was performing the intraocular chemotherapy treatment and the cryotherapy.   The Dr. was very optimistic and recommended her for her fourth round of chemo the following day.  Shortly thereafter we met with the partner, and she indicated that Neve really has come a long way. She admitted that after the first treatment they were not very encouraged.  However, they now feel 100% positive that we are ahead of the tumor and it is controlled.  They were once very worried about the seeds but have seen significant change with positive response to the treatment.  They are confident they can save her eye.  Truthfully, this was the best news ever.  We sat in the waiting room with massive tears of joy. 

 

Within a few minutes they called us back to be with Neve in the recovery area.  We quickly realized she was all out of sorts from the anesthesia.   Poor girl had a rough wake up from this procedure.  Her hangry had settled in for the afternoon.  This four year old was CERTAIN that she didn’t know what she wanted.  And everything we offered was clearly not an option.  After 30 minutes, we asked to be discharged so we could just move along with her day, cuddle with her and get her to calm down a bit.  

We then went to meet with our Oncology team.  They have been so wonderful to us and spent a great deal of time answering our questions and working through our concerns to ensure Neve has as much comfort as possible.  The Oncologist reiterated that things are moving in the right direction.  He indicated that we will continue treatment until we reach the best case scenario and then do one more treatment.  In their experience, when they stop at the best case they find the tumor eventually comes back.  So their recommendation is to perform one more round beyond the goal.   

 

After the meeting, we left the hospital around four pm and stayed at the nearby hotel for the night.  We knew Neve was feeling better when she asked for pizza, breadsticks and Jello.  However, it was a fairly rough night with her waking up every few hours.   It was also a short night since we had to be up at 5 am for her 6 am arrival time at the hospital.

 

Her treatments have never been back to back days like this.  While it made sense to us logistically, we also know she doesn’t do well with anesthesia.  We made our way to the hospital where she slept for most of our time waiting for her 7:40 am start time.  Around 7 am she sat up and said her tummy hurt. She then got sick, but seemed to settle down.  At 7:30 we took her to the bathroom and she got sick again.  We were very nervous if they would proceed with the procedure at all.  The anesthesiologist spoke to her interventional radiologist who also spoke to the oncologist.  After about 10 minutes, they determined to move forward with her case.  We were worried about her, but knew the main reason she got sick was due to her procedure the day before and to her being dehydrated.  Once we left her in the OR, they spent about an hour giving her fluids to help her rehydrate. Once they got started at 8:40, the entire process moved along quickly.  In fact, one of the nurses told us it the most efficient procedure they had ever done.  

 

When we met with the doctor he reported the treatment itself was technically perfect and from an anesthetic standpoint, she was rock solid.  We were so relieved to hear this news.  We joined her for her four hours of sedation in the PICU.  Once that time was up, her recovery moved along quickly and for the first time ever, she didn’t get sick!  We were simultaneously in disbelief and relieved.  And, since she recovered so nicely, we actually left the hospital at 8:00 pm and made it home to our own beds that same night.

 

Since then, we’ve been hunkered down with the boys spending a lot of quality time together.  As Christmas approaches, we are keenly aware of the meaning of JOY during this reflective time.  While we would never wish this upon her, we are so thankful for the love and support of our friends and family.  The outpouring is astonishing.  You can get settled in such a routine and lose sight of the things that really matter in life.  “We are blessed!”  (Next time we see you, remind us to tell you the story about this quote.  It is a powerful one, and one Maggie’s dad told at our wedding.)

 

We wish you health and happiness this holiday season and in the new year.  Even though our lives have changed drastically, we truly cherish our good days and grow stronger through the bad ones.  And Neve McGinnity Bowden is one fierce little girl.  All we can say is watch out world; she has mountains to move.

 

We also need to say thank you for all the meals and baskets.  We are beyond grateful at the outpouring of support.  It definitely helps us feel less alone during this time!  Looking ahead to 2016, more dates have been opened if you are interested in helping out:  www.whatfriendsdo.com   Team name:  Neve Bowden.  Site password:  kickcancer

 

Thank you for everything and Happy Holidays.  

Love,

Maggie, Clay, Jackson, Myers and Neve

So thankful

Dear Friends and Family- 

We have some great news to share.  Yesterday, exactly two months after Neve’s retinoblastoma diagnosis, the Doctors reported that her tumor has reduced significantly!  They used words such as dramatic, excellent and remarkable to describe the progress made since last month.

What an amazing gift to receive the week of Thanksgiving.  We have an enormous sense of relief that the process is working and we are moving in the right direction.    Yes, we are shedding tears of JOY!  

Thank you for your support, care, concern, friendship and prayers.  While she isn’t in the clear yet, this little girl continues to fight and your positive thoughts and energy are carrying all of us through.

We wish each of you a very Happy Thanksgiving.  

In gratitude, 

Maggie, Clay, Jackson, Myers and Neve

“And though she be but little, she is FIERCE”  ~ William Shakespeare

Round two complete

The week of October 26^th saw us road tripping to Cincinnati twice….once for Neve’s EUA (Exam Under Anesthesia) which was done on the morning of October 27^th and then for her second round of chemotherapy on October 29^th.  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!

First round of chemo is complete!

Thank you, everyone, for the outpouring of letters, emails, texts, and calls.  We are humbled and grateful for your thoughts, prayers and love; they have definitely carried us through what was a very tough day last week when Neve received her first Chemo treatment.

On the morning of Wednesday October 7^thwe traveled to Cincinnati hopeful that she would be the second case of the day, although we weren’t entirely sure when her procedure would begin or how long it would take.  Fortunately, by 3:00 pm we were checked in and all taken back to the Operating Room to meet the other doctors and nurses that would be caring for her. Everyone at CCH has been so wonderful to both Neve and us as we ventured down this path for the first time.  Her Interventional Radiologist, Dr. Abruzzo, knowing how much see loves the movie Frozen even had an Elsa doll taped to the door of the OR.  She loved that!

Shortly after Neve’s procedure began, a few of our Ohio-based college friends arrived to provide us with hugs, laughs, emotional support and some much needed distraction.  Around 5:00 pm we were notified that the catheter had been successfully positioned behind her eye and they were able to start administering her chemotherapy, which lasted approximately 30 minutes.  By 6:30 pm she was out of the OR and being transferred to the PICU.  Dr. Abruzzo met with us to confirm that everything went to plan with no complications and that we would actually be able to leave the hospital around 10:30 or 11 pm.   We went into this day unsure of when Neve’s procedure would begin, how long it would take or how long she would need to be sedated once it was over.  We were told to expect the maximum – 5 to 6 hours for the procedure followed by another 5 to 6 hours of sedation for recovery.  So we were extremely happy that the procedure was only 3.5 hours and that she only needed to be sedated an additional 4 hours….still a lot for a little body but much better than 11-12 hours. 

It was around 7:00 pm when we got to see Neve in the PICU where she was sedated and recovering peacefully.  Another set of college friends arrived and provided more hugs and emotional support. We naively thought Neve would be completely asleep the entire time, but she did occasionally stir asking for something to drink.  This was not surprising since she hadn’t had anything by mouth since 9:30 am.  After four hours in the PICU, her sedation meds were stopped and she was disconnected from all the IV’s, monitors, catheters and breathing tubs.  We were finally discharged by midnight but having been up since 5am we thought it best to spend the night in Cincinnati at a nearby hotel.  However, we didn’t get much sleep.  We learned the hard way that Neve doesn’t do well after anesthesia.   She threw up several times in the early morning plus had an elevated temperature, which gave us cause for concern as it could have been a sign of infection (thankfully it wasn’t).  We also learned we need to travel with thermometers, Gatorade, and saltines as we couldn’t find a convenient 24 hour CVS at 5 in the morning.  Most of Thursday was a blur but thankfully the first round of chemo was complete and we made it home safely but all exhausted.    

Neve has been absolutely incredible during this whole process.  We spent the weekend recuperating and staying close to home.  Her right eye is irritated and swollen closed, which we were told could be a side effect of the chemo.  While it is certainly uncomfortable she isn’t letting it slow her down. In the big scheme of things, we know that it could be a lot worse, however, it is tough to see our little girl go through this.  We keep telling ourselves that her swollen eye is an indication that the chemo drugs were correctly delivered to the eye, that the treatment is working and she is one step closer to her being cancer free. 

As we move through each day, we hold on to the many words of wisdom that you have shared.  While we may not respond right away, please know that we read every email, text and card that is sent as it helps us to remain strong and stay positive through this difficult time.

We are grateful and appreciative of the many offers to help.  To make that part of the process easier a website has been created at:  www.whatfriendsdo.com     

Team Name:  Neve Bowden  

Link:  http://www.whatfriendsdo.com/team/1754/

Password: kickcancer

 

We will do our best to keep everyone updated as this journey continues.  In the meantime, we are going to do our best to enjoy fall, gear up for Halloween, and spend a lot of good, quality family time together.  As always, please continue to keep Neve in your thoughts and prayers.  

Fondly,

Maggie & Clay

Jackson, Myers & Neve

Update on Neve

Dear Family and Friends,

We write today with some unfortunate news about our four year old daughter, Neve. Some of you are already aware and others are not, so bear with us as we'll start from the beginning and give you a complete update of where we are today. 

Several weeks ago we noticed a white spot in the lower quadrant of her right pupil so scheduled an appointment with a pediatric ophthalmologist.  On September 23^rd we took her for an initial examination and the doctor was concerned enough to immediately refer us to his partner who specializes in eye cancer.  A lot has transpired over the past week and as of today, October 1^st, we are one week into Neve’s positive diagnosis of intraocular retinoblastoma.  

It has been a whirlwind of multiple doctor visits, several examinations including some under general anesthesia and an MRI to determine what the tumor is, if it is anywhere else in her body and how best to treat it.  The good news is that the tumor is confined to her right eye and appears very treatable. The cure rate for retinoblastoma in the US is extremely high.  The not so good news is that on an “A-E” classification scale it is classed as a group E, with A being the best and E being the most advanced. This is determined based on size and location.   She is barely an E but because the tumor has touched the lens they are classifying it as an E.  Through it all Neve has been incredible.  She hates eye drops, but she has not complained, cried or resisted any of the examinations.  Her strength is carrying us through.

Neve’s doctor in Indy referred us to the Cincinnati Children’s Hospital (CCH) as they are one of only a handful of facilities in the country doing an alternative type of chemotherapy to treat retinoblastoma. This past Tuesday we spent the day at CCH meeting with an incredible team of specialists including an ocular oncology ophthalmologist, pediatric oncologist and the chief of pediatric interventional neuroradiology going over our options. There are several treatments available but with the suggestion of her medical team she will receive intra-arterial chemotherapy (vs intravenous chemotherapy). One of the great things about intra-arterial chemo is that it is much less toxic with approx. 10% volume of chemo drugs administered compared to traditional chemo, but 250 times the potency.  The delivery process is not simple, but in laymen’s terms a catheter will be inserted into her femoral artery and then threaded through her body to a position behind her right eye where the drugs will be administered.  This process alone can take anywhere from 3 to 5 hours which is followed by 6 hours of sedation so she remains still.  Because the chemo drugs will be delivered directly to the back of the eye the potential side effects are limited to the immediate surrounding area and may include a temporary rash as well as the temporary loss of eyelashes, eyebrow and possibly some hair along her forehead.   However, this is considered outpatient surgery so she should bounce back to normal activity the following day.

Neve will likely have treatments once a month for up to six months, depending on how the tumor responds to the chemo.  If, after the first few treatments, they determine it isn’t working we will consider enucleation, which will remove the eye (and the tumor) and she’ll live a healthy, active life with a prosthetic eye.  If the tumor responds well to the treatment they estimate it will take 4 to 6 sessions. 

Another reason the tumor is classified as an E is because the tumor is shedding Vitreous Seeds into the jelly of the eye. The intra-arterial chemotherapy is not effective at attacking or treating these seeds so another option is for the ophthalmologist to inject a very small amount of the chemo drugs directly into the eye and adjacent to the seeds to destroy them.  Additionally, the ophthalmologist my choose to use cryotherapy where a small metal probe is cooled to very low temperatures and placed next to the tumor, killing the retinoblastoma cells by freezing them. It is only effective for small tumors toward the front of the eye.They will keep a close watch on these seeds throughout her treatments and determine the best course of action.

Through all of this our number one goal is to cure Neve.  Our secondary goals are functionality and quality of life followed by the third goal of cosmetics.  These goals are at the forefront of our decision making throughout this journey.  And that is what this is- a journey.  

We are working through the best way to communicate and will try to have something set up in the coming days.  We appreciate the many offers to help from those who are close by and those from across the globe. We are humbled by the outpouring of love and support that we have received.  We will be honest about our needs and will ask for help if it makes this journey easier.  As always, we are eternally grateful for the support that has been given and for the support that is coming.  Your positive thoughts and prayers give us the strength to get through this incredibly tough time.  So please continue to keep Neve, us, the boys and her doctors in your prayers.

At the core of this, Neve McGinnity Bowden is one amazing girl.  We knew it before September 23^rd, but we are seeing it every minute since then.  We feel blessed and honored to be her parents and to have her in our lives.

Her Grandmother found a t-shirt with this quote on it and we think it sums up her strength perfectly:

“And though she be but little, she is fierce”  -William Shakespeare

Fondly,

Maggie and Clay

Jackson, Myers and Neve