Saturday Night Fever

Another week, another set of challenges.

Edward completed his fourth cycle of chemo on June 7th.  His post-chemo course was largely uneventful for the first 10 days.  He had his typical nausea and depressed appetite, both of which are minimized by scheduled doses of ondansetron, an anti-emetic.  His energy level was actually pretty good overall.  Maybe we were starting to get the hang of all of this....

Then, last Saturday, Edward fell asleep in the middle of our living room, literally in the midst of playing with one of his toys.  It was not even close to nap time.  He had felt a little warm the night before and his temperature was a little elevated at 99.3, but overnight he defervesced and seemed to be himself when he woke up.  I checked his temperature while he slept in my lap: 99.5 again.  Thirty minutes later it was 100.1.  Uh-oh.

We called the oncologist on-call to let him know that it seemed that Edward was developing a fever.  He reviewed the protocol for fever with us as there is a certain temperature value over which we must be directly admitted.  We checked Edward's temperature every thirty minutes and sure enough we crossed the threshold required for direct admission.  We already had our bags packed as we knew a trip to the hospital was imminent.  In the ER, poor Edward's temperature had skyrocketed to 103.9!!  They drew blood work, urine and blood cultures, got a chest x-ray and started Edward on broad spectrum antibiotics.

His CBC revealed that his neutrophil count was dropping as expected due to his recent chemotherapy.  He had a routine check 3 days prior and his neutrophils were ~450, but were now down to a little over 200.  A level anywhere under 500 marks 'severe neutropenia' and puts him at risk of severe infections that his body would otherwise be able to ward off.  His other lab work was fortunately relatively normal as were his other vital signs.  Edward then developed some pretty impressive diarrhea and threw up on Katie a few times (never on me though!...he likes me better).   After about 24 hours, his fever had actually resolved with the antibiotics and all his cultures remained negative.  Unfortunately, his neutropenia persisted and you cannot stop the antibiotics until his neutrophils have recovered in case the antibiotics are suppressing an infection that has yet to be identified.

On Monday, hospital day #3, his neutrophils were zero....yep, zero.  Katie, Edward and I were already getting a little cabin fever from having to isolate him to a 15'x15' hospital room 24 hours / day and now it looked like we were in for the long haul.  Then on Tuesday, his neutrophils jumped to.....30.  But on Wednesday they were 90 and on Thursday they had increased to just under 200.   Finally, we were on the road of neutrophil recovery.  Thus, they were comfortable taking the antibiotics off and discharging us as it seemed his immune system was making a comeback and all of his cultures remained completely negative.  After nearly a week in the hospital, we were back home again!

Edward has now returned to his old tricks of getting into anything and everything - which, though tiring, is infinitely better than the lethargic, febrile, vomiting version of him just a few days prior.  Despite all of the hurdles that life keeps throwing at him, Edward continues to grow and make developmental progress.  He is able to walk quite well now (though still prefers to crawl from time to time) and is babbling more than ever.    His favorite new food is anything chocolate!

Who is Your Hero?

My sister Nicole is a junior at Boston College.  She applied for and accepted a summer job up on campus this year as an Orientation Leader.  She is having a great time introducing many future students to her beloved B.C. while hanging out with friends during free time.  We were very proud of her when she was invited into this position as she is growing and developing into a strong, confident young women each day.  I always knew Nicole loved me, but Nicole is also the quiet one, or at least compared to me she is!  We may look like twins (one with blonde highlights, one without) but I am the loud one who says what is on my mind, and Nicole is definitely more thoughtful and guarded when it comes to emotions and feelings.  She told me that she had a to give speech a few weeks ago at the beginning of the orientation, and she wanted me to read it.  She didn't tell me what it was about, but I had absolutely no idea I was going to read, and cry, and read, and cry, while seeing the raw eloquence and beauty in her essay.  What did she write about?  My Edward.... I totally didn't see this coming, because, like I said, Nicole doesn't necessarily share her feelings and thoughts as readily as others.  I asked her if I could share this on the blog, and so.............

Who is your hero? Most people say that their heroes are older than them, but my hero is my nephew, Edward, who is 16 months old. There are two dates that will always stick out in my mind about Edward. First on January 19, 2011, Edward made a grand appearance into the world four months early weighing only 1 pound 12 ounces. From the very beginning of his life Edward was a fighter. He has fought through many surgeries and developmental delays from being a preemie, but has somehow found a way to beat his odds. On his first birthday we thought that he was finally healthy, but on March 1^st, 2012 our hopes turned into fears. I will never forget this day. I was sitting in the locker room after a really hard workout and I called my mom to complain about the things that seemed like the end of the world: school, field hockey, and boys. All of sudden I heard my dad’s voice in the background which was weird because he should have been at work. My dad is the type of guy who will work until the day he dies so I instantly thought something was up. So I asked my mom why my dad was in the car and she hesitantly said, “Uhhh we are going to buy a new grill.”  I laughed and said, “What? It’s snowing out!” And to her luck my dad’s phone rang, but before she hung up with me my mom insisted that I call her after class. After my 3:00 English class, I called my mom.  At first the conversation was normal, but then she said “Nicole, I have to tell you something,” and my heart dropped. I remember everything around me froze, as I imagined horrible scenarios in my head. These thoughts began to burry me along with the snow falling around me. My mom said, “Now before I tell you, I need you to promise me that you will be strong and mature for our family right now.” When my mom said that Edward was diagnosed with bilateral retinoblastoma cancer, I couldn’t believe it. I didn’t even know that there was such a thing as eye cancer. Bilateral retinoblastoma is a rare pediatric eye cancer that affects 200-300 children in the U.S. per year. Edward has a stage two tumor in his right eye and stage three tumor in his left eye that is very close to the optic nerve, which makes it scary because it could spread to the brain. Unfortunately, you cannot take the tumors out through surgery so Edward has to do at least 6 cycles of chemotherapy  along with laser eye surgeries. If this does not work, then they might have to remove his left eye before the cancer spreads. Even though I have only known him for a year, I have grown to love Edward more than anyone in my life. All I could picture was his piercing blue eyes that melt my heart everytime I look into them. The next morning I flew to my sister’s house and I remember trying to hold myself together, but when I saw my sister through the glass door I broke down because she is my best friend in the entire world. As I buried my tears into Katie’s shoulder, she held back her tears and said, “Nicole it’s going to be alright, he’s going to get through this.” From the very beginning, my sister Katie and brother-in-law Michael have been optimistic. Instead of acting like I did, Katie and Michael searched for the best doctors for Edward while trying to crack jokes to ease the tension. The moment I finally accepted this was a reality was when I saw him receive his first chemo treatment.  It still didn’t hit me as I walked to his hospital room with my brother and mom. When I opened the door and saw his smile light up the room,  while he was hooked up to all of these machines shooting chemo into him, I felt the worst pit in my stomach that I never want to feel again. All Edward wanted to do was crawl on the floor but we had to hold him and keep him occupied for three hours while he got his chemo (which is very hard to do to a one year old who is active and close to walking). Retinoblastoma does not cause pain, but knowing all of the pain he would go through from the treatments is what brought me to my breaking point. If you look at Edward you wouldn’t even think that he has cancer because he is the happiest little boy in the world. At first this killed me, but I think it is better that he doesn’t know because he just keeps fighting for his life because that is all he has ever known. For a while I didn’t want to be happy because I felt helpless and guilty to be having fun at college while Edward fought for his vision and life. In an attempt to help with the bills that are not covered by insurance, I hosted a bar event on the last day of classes. Even though I can’t take the cancer away, I felt that this was the least that I could do. The event ended up raising over $8,000 to put towards the chemo and eye surgery bills. Before the event, I held in every emotion and fear  because I didn’t want people to feel sorry for me. However, the event made me realize that people truly wanted to help and support me and didn’t just go to drink and celebrate the last day of classes. That night I was overwhelmed by everyone’s smiles, tears, laughter, and generous donations that people forced me to take because they wanted to help. Neither the success of the event nor the amount of fun people had that night changed my attitude, rather it was the fact that none of these people have even met Edward and felt obligated to help in any way possible. This realization tore down all of the walls I put up from the beginning and gave me a sense of hope that I will be able to get through this. In the beginning I was very stubborn and thought I was strong enough to get through this by myself, but my vulnerability has allowed me to accept the support of my family and friends because without them I wouldn’t be in the right state of mind to be the best aunt to Edward.

So this I believe. I believe in the statement that “You can’t get to Easter Sunday without Good Friday.”  Even though we may not understand why bad things happen in life, these experiences help us to grow, mature, and put life into perspective. I believe that you never know how strong you are until being strong is the only choice you have. Katie, Michael, and Edward have inspired me to be optimistic and grateful for their presence in my life during this journey. Edward’s resilience, smile, and courage pushes me to be a better aunt, sister, daughter, and friend. Rather trying to decipher God’s plan for Edward and my family, I try to be the best that I can be to help my little hero beat cancer.  

Michael and I would like to thank everyone.... our parents, aunts, uncles, sisters, brothers, cousins, friends, etc. who helped distribute "Eddie T-Shirts."  We would also like to thank everyone for their overly generous donations to help with Edward's medical bills.  We are truly blessed with the support from our family, friends, and strangers, yes, STRANGERS! thus far, and each card, email, text, phone call, etc. keeps our spirits high and our hearts focused on Edward winning this battle.  Cancer is an interesting thing.... it has the ability to rip your heart out and make you feel full of love and hope at the same time.... We thank you for keeping our hearts full and our minds free of doubt.  My Edward, my hero, too.

About 2 weeks ago, after hearing Edward cry out, Katie got up around 3am to give Edward his nighttime bottle.  In general, we try to alternate this duty, though I have to admit, Katie has certainly done more of these nighttime feedings than me.  After changing his diaper, Katie brought him downstairs to the kitchen to warm the bottle. 

Drip. Drip. Drip.

Unfortunately, that dripping was not from the bottle, but from the upstairs bathroom sink, ever so kindly depositing water into our dining room!  Luckily, the dripping was far from a deluge, but as anyone who has had a leak knows, it does not take much water to wreak havoc.  The leak traversed about 10-15 of drywall before showing itself, so they had to cut out almost 100 square feet of ceiling to fix the problem.    We have never been happier to be renting!

But much more importantly, Katie and Edward headed up to Philadelphia this past weekend to start the fourth cycle.  We had another CBC last week to check on his blood counts.  His neutrophils had increased substantially to 710, but was still below the required 750 to receive chemotherapy.  However, similar to the last cycle, our oncologists felt that it was a significant enough recovery to head to Philadelphia in a few days for his eye exam under anesthesia (EUA), followed by chemotherapy back in Charlottesville.

Each EUA is a little nerve-wracking.  As we have previously mentioned, Wills Eye is a worldwide center of expertise in treating retinoblastoma.  Because of this, many children are treated here and many have complex, advanced retinoblastoma as the more difficult cases are referred to Dr. Shields from around the country and the world.  Due to the advanced staging of the tumors for many of her patients, these eye exams do not always reveal good news.  Katie and her mom, who accompanies her to every EUA, have gotten to know a few of these families in the waiting room of the surgical suite.  Even though each family does not share all of the details with each other, it is clear when after an EUA, some families have received good news while others have received bad news. 

Katie and I always worry that one day, we will be one of the families who receives bad news.  Edward's chances of survival are excellent, but he has a very real chance of losing one of his eyes due to the need for enucleation and his chances of having 20/20 vision in both eyes even with the best possible outcome is zero.  The vision is his left eye is permanently compromised, but there is still a chance his right eye could have 'normal vision.'

After Edward's procedure, Katie and her mom are brought back to a post-procedure family meeting room for a 'debriefing' of the exam, the tumors and the therapies applied by Dr. Shields and her team.  I was able to join via speaker phone.  Good news!!  Both tumors have gotten smaller, though not dramatically so.  There was no evidence of tumor spread or extension.  Also, a little bit of the macula (the business portion of vision) on the left was exposed by the tumor regression.  This means that he might have some vision in his left eye aside from some fuzzy peripheral vision.  His right eye still has a chance of having essentially normal vision.  Overall, great news. 

Katie and her mom then put the pedal to the medal and furiously drove down I-95, then US-29 to make it back to Charlottesville to receive chemo here at UVA (and so Katie could attend my graduation from residency that evening).  Edward got the first half of cycle 4 on Wednesday and then completed the second half today after a night of observation in the hospital.  All of the infusions went very well and Edward did not hold his breath!  We are now safely back at home and are on to cycle 5 in a month!

We want to again take the opportunity to thank all of you for continuing to support us in so many ways.  The generosity of our family, friends and even complete strangers has been completely overwhelming (in a good way) and uplifting.  Katie and I hope that one day, our own lives will settle down a little bit and we can return some of this goodwill and kindness.  But for now, we remain grateful for all of your thoughts, prayers and support.

 

Memorial Day

A couple weeks ago, Edward's neutrophil count was down to 30, which is quite low and we were on 'high alert' if you will for any signs of fever or an opportunistic infection.  Katie and I alternated asking each other "Does he feel hot to you? Maybe we should take his temperature..."  Luckily, despite his nervous parents, Edward did just fine and his neutrophils, though still low, were up to the mid 200s.  That still counts as 'severe neutropenia' but the rise to over 200 indicated that his bone marrow was starting to rebound and with each passing day, his total count should rise instead of fall.

The recovery of his bone marrow also allowed us to visit Katie's parents for Memorial Day Weekend at the beach in Ocean City, New Jersey.  I fortunately had a very well timed week of vacation, so the three of us made the trip north for a much needed respite.  It turns out that Edward loves an audience and had a great time with his grandparents, aunts and uncles.  His PICC line and his sensitivity to the sun prevented us from prolonged days at the beach, but after a careful 'saran-wrapping' of his PICC line and near overdose of SPF 1 million, Edward was allowed an hour at the beach almost every day.  As you can imagine, he loved crawling around in the sand and knocking over the sand castles that we made.  He also loved eating the sand, which was definitively less cute.  He even got to ride on his first carousel.  He was all-smiles as Katie and his Aunt Nicole held him on a giant multicolored horse on the carousel, but as soon as it started, he got a little frightened and started to cry!  This was quickly remedied with an vanilla ice cream cone with rainbow sprinkles (or rainbow 'jimmies' as they are called in the north).

Edward had another CBC yesterday and his neutrophils have risen to 710.  His next eye surgery is planned for this Tuesday in Philadelphia, followed by chemotherapy, which is to be delivered here in Charlottesville at UVA the next day.  We are hopeful that his counts will rise above 750 before Wednesday so as not to delay this next cycle.    If we can get through this one, only 2 left!