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.