Tuesday, December 22, 2015

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