Two Weeks of Waiting.....

First of all here are Edward's hilarious beach pictures from the beginning of July.....

Over the last 2 weeks we have been playing the numbers game, and we have NOT been winning!  Eddie's darn neutrophils have been bouncing all over the place, but have not yet risen about the desired 750 mark.

This is Katie by the way, so you can expect a 5th grade type explanation of things/cussing/typos/etc. hahaha.  Basically neutrophils make up the largest percetange of what white blood cells are made of, and neutrophils are used to measure if the body is ready or not for the next round of chemotherapy.  So we came back from Will's Eye on the 11th and went to UVA on the morning of the 12th for a CBC (Complete Blood Count).  This involves me, my mom and Eddie, going to the Oncology floor where the nurses check all of his vital signs and then take a small vial of blood from his PICC line ( I don't know what that stands for, and I SHOULD!  Peripheral Interarterial Central Catherter???? I am too tired to google it right now... lazy...) anyways it doesn't hurt him at all, but the blood is sent to the lab, and then we wait.  and wait.... and wait...... until the lab results are back.......We expected to have fluids started and get admitted to the 7th floor, which usually happens. We have never NOT (double negative, I know I know) made counts before so we were not expecting Eddie to have a ANC (Absolute Neutrophil Count) of 730.  He needs 750.  Please, please, please, I beg the doctor.  Nope, they said, we have to go home and wait a few days.   For 20 darn cells? ahhhhhh! SO disappointed.... So me, my mom, and Eddie, packed up all 8 ( not kidding ) bags that we brought to the hospital and lugged everything out to the parking lot to go home.  We were very sad and decided to take Eddie to the toy store on the "way" home and buy him 3 toys, and then..... oh, what do yo know? Sweet Frogs is next door to the toy store, so all three of us had frozen yogurt for lunch! This all happened on Thursday.

Bring on the next few days of waiting.  My mom went home.  Mike and I had a nice weekend with Edward. We didn't do anything special, just played and laughed, and enjoyed our extra time.  Waiting, waiting, waiting for Monday, our next scheduled CBC.

AND THEN COMES SUNDAY EVENING circa 5 p.m.

Me:  I think Eddie feels kinda warm.
Mike: Yeah, me too, we should check his temperature.
Thermometer:  Beep. Beep. Beep. 100.7
Me: Oh Shit. Here we go again.
Mike:  Well maybe it wasn't right, lets try the other thermometer.
Me:  Whatever...
Other Thermometer: Beep. Beep. Beep 100.9
Mike: Well, I will call the on-call doc.
Me:  I will pack an overnight bag.  I know we are going to end up at the hospital tonight......

* Edward goes to bed, no tylenol allowed in case it masks a serious infection, the on-call doctor said to come straight to the ER if his temperature reaches 101.5.  Thankfully, it never did, but Mike and I sat on the couch later that night and had this conversation.

Me: There are 2 more beers in the fridge.  If we end up going to the hospital tonight, you and me are chugging those beers before we leave.
Mike: Screw that, I am packing them in my bag and drinking both of them myself at the hospital.
HAPPY 3 YEAR ANIVERSARY MIKE! hahaha.  What a brat!
 
MONDAY MORNING of the 16th: Long story short, all 8 bags are packed, I haul Eddie and the riduluously packed stroller to the hospital, blood drawn, sent to lab...... 190 Neutrophils.    190????? WHAT!! They went down?  UGH, obviously he is getting sick, and whatever he has is driving his white blood cells down, down, down. We had a bad feeling because of the fever, but we didn't think his counts would drop that fast....

And so I pack up the bags and Mike walks me to the car, Eddie and I go home. With sad faces.

He had low grade fevers, not high enough to be admitted, but high enough to make a new young Momma worried all week!  He had a runny nose, cough, and was tugging at his ears.  He wasn't sleeping at night and was only drink 2 ozs out of his usual 6 oz bottles.  My Mom and Aunt Annie came down to visit and spoiled him rotten, but they both agreed, he wasn't himself.  We took him to the pediatrician, but no ear ache.  We all had our money placed on our bet that he had an ear ache. We were all wrong, just a summer cold, that was wreaking havoc on his little chemotherapy/worn out immune system.  Aunt Annie gave him a TRAIN to make him feel better, hahah, and maybe it worked???????  He loves riding on his train.  She also brought 25 tracks that connect so he can ride it all around the house.  I would like to shove these darn tracks.... well, Aunt Annie, if you get a packed in the mail.... hahah I would never.  He loves it!  But now our living room is a train station.   How many times a day do I stub my toe on a train track... don't ask me to count... Then on Friday, my mom and aunt Annie went home :(

Bring on the next weekend of waiting.  Mike and I had a nice surprise Satutday morning.....squealing, playing with his toys, running all over the place!  He started eating much better and drinking a little more too.  Edward was even better on Sunday.  We were so happy to have our Edward back, and we spent the day waiting, waiting, waiting for Monday morning, our 3rd scheduled CBC. I wrote this letter on facebook to "encourage" his neutrophils:

Dear Neutrophils,
I know we have a love/hate relationship.
Tomorrow, we need 750 of you to show up on Eddie's CBC.
So get your shit together..... or else.
Love,
Katie

* My mom called me immediately and scolded me for using the "s-word" but I told her that desparate times call for desparate measures....

MONDAY  MORNING of the 23rd:  Long story even shorter.... 500 Neutrophils..... still not enough, come back on Thursday, they said.  And so here we are on the eve of our 4th sheduled CBC.  I am ANXIOUS, so damn anxious, I can't sleep.  I. just. want. to. cross. off. cycle. number. 5. and. then...... at least we can say, "only one more round of chemo"..... and we. can. take. that. PICC. line. OUT!

We will let you know tomorrow how it goes..................

Holding Pattern

After undergoing another EUA last Wednesday, Edward had a CBC drawn on Thursday to morning to check his counts.  His chemotherapy suppresses his immune system, most notably his neutrophil count.  He needs his neutrophils to be over 750 to receive each cycle to avoid unnecessarily prolonged periods of immunosuppression and the associated risk of infection.

Two weeks prior to his EUA, his neutrophil count was surprisingly 880, well over the required 750 - his neutrophil count has always been a little sluggish in its recovery from the previous cycle, but we were glad to see such a robust number.  The following week it was a little lower at 680, but these levels naturally bounce around a little bit, so we were not too worried as we had another week to go before having to make it to 750.

So we found ourselves on Thursday in the oncology clinic with our bags packed anticipating a two day admission for chemotherapy.  Per usual, they drew his blood on arrival and started IV fluids as his urine output has to reach a certain threshold before starting chemo.  But unfortunately, his labs came back and his neutrophils were only 730.  A mere twenty cells away!  Katie tried to gently cajole our oncology team, but of course, as they should, they stuck to the preset protocol.  In fact, UVA's typical protocol requires a neutrophil count over 1000, but CHOP uses 750 and UVA felt comfortable using this lower level.  

We were definitely disappointed as we are anxious to cross each cycle off of our list.  We seem so close to wrapping up these six cycles, yet so far away at the same time.  However, we knew that it was best for Edward to wait and to allow his immune system to be as strong as it could be before delivering the next cycle.  We were given an appointment for this morning to recheck his counts and hopefully start chemo today.

Then on Sunday, Edward was 'clingy' and a little irritable, grabbing at his right ear.  This was quickly followed by a low grade fever which we watch like a hawk.  His temperature eventually climbed above a certain threshold requiring us to call our oncologist, but fortunately was not high enough to necessitate a trip to the ER or direct admission.  Edward actually seemed to perk up a little bit this morning and did not have a fever through the night.

His labs were drawn again this morning.  We waited patiently for the results, alternating cheerios + corn pops with blueberries + cheerios to keep Edward happy.  190.  Yep, 190 measly neutrophils.  The viral illness that he likely has has driven down his immune system even further (a natural response unfortunately).  So again, we wait.....and wait.....and wait.  In fact, we are not going to have blood work drawn for another week to allow him to convalesce from his current illness and then allow his immune system to adequately recover.  I think we are ready to be done with chemotherapy.

Rollercoaster

We want to again thank all of our family + friends for all their support as we could not have gotten this far without each of you.  The outpouring of support, especially recently, has been completely overwhelming.  The generosity of our family, friends, parents of our friends and even friends of friends has been unbelievable.  We thank you all from the bottom of our hearts.  

Since Edward's discharge for neutropenic fever three weeks ago, we have been fortunate to have little news to report as the past 21 days have been filled with diaper changes, trips to the playground and walks around the neighborhood instead of IV poles, hospital food and antibiotics.  Life almost seems 'normal' (whatever that means) from time to time.

Except of course for last Friday.

Leukocoria, or white pupil, is the hallmark sign of retinoblastoma.  There are a few other causes of leukocoria that are not malignant, but new onset leukocoria is cause for serious concern and immediate evaluation.  Edward presented with the more subtle sign of strabismus as his initial symptom of retinoblastoma.  However, after taking some pictures of him shortly after his diagnosis, we actually saw the leukocoria in his left eye, which contains the much bigger tumor.  We had never noticed it the right eye as the tumor in that eye is much smaller. 

Except of course for last Friday.

Edward was playing with his new toy from Katie's mom - a bubble lawn mower of which he is very proud - when Katie took a photo with her phone to send to her mom.  As she reviewed her pictures, she called out to me, "Mike...."  Every spouse knows that tone.  It's not the "I'm mad at you" tone or the "I need you to kill this bug" tone or the "Goodness, you are annoying" tone, but the "I need you right now" tone.  I was working in our backyard, attending to our garden that was wilting in the 100 degree weather.

There was now leukocoria in both eyes - left and right. 

My initial reaction was disbelief (aka complete denial).  It must be the camera, or the angle, or the lighting or something.  Let me take the picture, I inanely remarked.  Same result.  Both eyes now eerily white.  We flew to our respective computers and started to review every photo we had, but could not find any evidence of the right eye looking white.  Needless to say, our 'normalcy' evaporated instantly and we were back in....well I am not sure what to call it....but it is a feeling with which we are getting a little too familiar.

I immediately called the on-call doctor at Wills Eye in Philadelphia to get their opinion.   The physician, who was very nice, offered that maybe it was the angle at which we were taking the photo (we had taken at least 30 pictures) or maybe we had never noticed it before (don't think we would have missed that).  Of course, these things always happen on Friday evenings, after every conceivable office is closed.  There was no need to go the emergency room or see anyone that night, but the doctor on call recommended that we see our local opthalmologist for an eye exam and if there was any question or concern, we could come up to Philadelphia a week early for an eye exam under anesthesia.

An interminable 72 hours later, Katie brought Edward to our local pediatric ophthalmologist, who we love, the following Monday.  He actually offered to Edward on Saturday, but the derecho that tore through the Mid-Atlantic rendered his office without any power.  I sat at my desk at work completely distracted.  Then the call came.

No change.

Huge relief.  

Our shoulders returned to their semi-relaxed state and our lives returned to 'normal.'  We were scheduled to see Dr. Shield's today as part of our monthly EUA.  Katie went up to stay with her parents on Friday in New Jersey as their house there is less than 1 hour from Wills Eye.  Edward got to spend some time on the beach (lathered up in 10000+ spf of course) and his PICC line meticulously dressed with saran wrap.    We brought him to the Jersey shore over Memorial Day weekend and he was less than thrilled with the sand.  Fast forward six weeks and he is a changed man - chasing seagulls, digging holes, throwing sand and loving life. 

But more importantly, he underwent another eye exam this morning with Dr. Shields.  Another nerve-wracking morning awaiting the results.  As it turns out, your prayers are working because we got another good report today.  There is no evidence of tumor progression or new seeding of the tumors.  The tumors have not shrunk too much in size but have started to calcify and turn into scar.  This scar unfortunately does lead to vision loss if it covers the macula (central vision) which it does in Edward's left eye.  We are hopeful that he will retain normal vision in his right eye and that he can have some vision in his left eye.

We are scheduled for chemotherapy at UVA tomorrow morning asssuming his neutrophils are above 750.  They were 880 two weeks ago, but then dropped to 660 last week.  We will see what they are tomorrow.  We can't wait to cross cycle 5 off the list.  We will let you know how it goes and put up some pictures of Edward's beach adventures on the next post.

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!