Thursday, April 19, 2012

Rainy Days

Rainy days make us a little stir crazy in this house.  When it rains it means no walks for me, Winston, or Eddie.  Thus, my two darling boys drive each other (and me) crazy!

Solution:  What do you do on a rainy day and you can't swim outside?  You have an indoor pool party of course!  Edward's physical therapist suggested I fill the pool with toys and pillows, so I took her suggestion a bit further....

                   "Mom, you are the coolest!" ( What I imagine he is saying to me)
                                                    Rolling around...... a.k.a. "splashing"
                          Wait, Mom, it is not nap time yet, I just have to get this one thing......
                                          I almost got it, I promise Mom, almost............
                                                                 GOT IT!!!!!!!!
                                                 I just wanted my football Mommy.....

BEST. IDEA. EVER.  Thank you Jen! Our "pool party" kept him busy for a long time.  I was even going to put his swimsuit on, and then I thought, "Okay crazy, calm yourself."  It is bad enough that I put his "friends"/ stuffed animals all around the pool.  Not exactly sure who had more fun yesterday......

Today I took Edward to the hospital for his 9:00 a.m. appointment for his CBC.  Sometimes, Mike can slip away from work and join me for this visit so I was not surprised when Michael's smirk greeted us as the elevator doors opened on the 4th floor only to tell me I was 6 minutes late.  Ahhhhhh. Punctuality..... is for the birds these days.... only 6 minutes late after a total bottle refusal and poopie diaper just as we were walking out the door?  I would call that a raging success.  His neutrophil count ended up being really low, 250.  We still have a week and a half for those darn neutrophils to rise up above 750, but it does mean that he is extremely susceptible to any infection, because the chemotherapy is doing its job but wiping out his immune system as well.

I realized on the way home from the hospital that we were out of coffee, and so I decided that since I already had Edward's entire breakfast and milk packed with me, we were going to Starbuck's for a breakfast date! I had my coffee and muffin and Edward sat happily in his stroller munching on about 100 cheerios.  I started to feed him his yogurt and this weird, creepy older man in his workout clothes/jumpsuit leaned over and said to me, " I wish someone would spoon feed me breakfast."  Ha... ha... ha... I awkwardly responded and looked away...and thought to myself, "Quick, exit stage left, let's get the heck out of here Eddie!" And I laughed all the way home thinking, no matter how serious, how stressful, or how awful life might seem at times, there are ALWAYS times for laughter!  WHAT A CREEP.  Edward and I are NEVER having a breakfast date at Starbuck's again.  Our front porch is just fine :)

Tuesday, April 10, 2012

Cycle 2 - Complete!

Our resident tough guy, Edward, has successfully completed his second cycle of chemotherapy!  I unfortunately had to work and thus, Katie and Edward headed up to Philadelphia without me to check cycle 2 off the list.  They actually spent the whole week and Easter weekend up in Philadelphia with Katie's family. 

Edward first had his EUA on Wednesday at the Wills Eye Institute to check on the progress of the tumors.  After only the first cycle, we were hopeful that we would see the tumors were the same size and definitely not bigger or with new signs of vitreous or retinal seeding  (which are kind of markers of tumor growth).   Yet again, we had another Easter miracle as both tumors were actually smaller!!!!  Our opthalmalogist was very pleased with what she saw and remains hopeful that we can preserve his vision in his right eye.  The vision in his left eye will almost certainly be compromised no matter how successful our treatments are, so the goal is to avoid enucleation of this eye and preserve whatever vision he may have left in this eye.

Following a long but successful morning at Wills Eye, Katie, Edward and Grammy Schuster made their way to CHOP for chemo.  The first few hours of the infusions went well without any serious breathholding or passing out!  They spent the night and received the second infusion of etoposide Thursday morning.  All in all, a very successful trip.  The only bad news is that we learned during this past visit that CHOP does not take our insurance.  We knew Wills Eye did NOT and planned to appeal the 'out-of-network' rate to our insurance company due to medical necessity.  However, we were first told that CHOP did take our insurance, only to find out this past week that they do NOT!  So if any of you actually won that mega millions a few weeks ago, expect an email from us...haha! In all seriousness, because of this change, we may need to receive the rest of our chemotherapy at UVA.  Decisions, decisions.....

Katie and Edward then spent Easter weekend knee-deep in chocolate bunnies (for Edward) and jelly beans (for Katie).  Enjoy the pictures below!  We are now all back together safely in Charlottesville and have a CBC check planned for this Thursday at UVA.

Sunday, April 1, 2012

The Road Ahead

Edward completed his first cycle of chemotherapy during the first week of March and since that time, Katie, Edward and I have essentially been living in blissful (and willful) ignorance.  I have to admit that aside for some thinning hair and a somewhat finicky appetite, Edward seems to be his happy, healthy self as detailed in Katie's post below.  Since the first cycle, our only required follow-up has been a weekly blood draw to check his complete blood count (CBC).  This lab test measures his white blood cell count, hemoglobin/hematocrit and his platelet count.  A well-known side effect of chemotherapy is the lowering of these counts and monitoring these levels is part of the process.

The most important of these lab values is his absolute neutrophil count (abbreviated ANC).  Neutrophils are a type of white blood cell that are key in fighting off infections, particularly bacterial and fungal infections.  When one's neutrophils are low (specifically less than 500), you are considered neutropenic and any infection has the potential to be life-threatening.  For example, if he gets a fever when he is neutropenic, this almost assuredly leads to an immediate admission to the hospital for blood and urine cultures, broad-spectrum antibiotics and close observation.

Edward actually suffered from neutropenia of prematurity while in the NICU.  His bone marrow was too immature to produce enough neutrophils early in his stay.  Fortunately, aside from one infection during week two of life, his neutropenia at that time resolved without any lasting consequence.  Before starting chemotherapy, his baseline blood work revealed an ANC of ~1200, which is technically considered neutropenic.  Normal is anything above 1500, mild neutropenia is 1000-1500, moderate neutropenia is 500-1000 and severe neutropenia is less than 500.  Your neutrophil count can bounce around a little bit even in healthy patients, but it should almost always be above 1000 or so.  His ANC of 1200 before chemotherapy was possibly secondary to a mild cold he had earlier that week - sometimes viral upper respiratory tract infections can drive the neutrophil count a little low.  We had repeat labs at CHOP in Philadelphia and his ANC was up to around 3000, which is great.

In addition to the associated severe infection risk, a neutrophil count of less than 750 prevents him from getting his next cycle of chemotherapy.  We have to allow his neutrophil count to recover before delivering each cycle to avoid unnecessarily prolonged periods of neutropenia.  So each week, we head to the oncologist office for a finger stick to check his counts.  Not surprisingly, Edward does not enjoy these visits all that much.  One week after his first cycle, his count was down to 780 and the following week it was down to 340, landing him in that severe neutropenia category.  We had to be vigilant for any signs of infection, no matter how subtle.  Last Tuesday, we had another blood draw, hoping that his counts were going to start showing signs of recovery as his next cycle of chemotherapy is due on this Wednesday.  But, of course, with our luck, his ANC was even lower at 290.

Through discussions with our oncologists, we decided to repeat the CBC on Friday to see if it was at least trending up.  If still going down, we would likely have to delay his next treatment.  Though it has been nice to have Edward at home with us and doing so well, we also want to get this whole process behind us and are anxious to get cycle two out of the way.  So Friday morning, we returned to recheck his counts.  My parents were in town this weekend and accompanied us to the doctor's office.  They weigh him and check his vital signs at the start of each visit.  This is the point where Edward remembers that last visit and begins to cry and fuss.  We then have an opportunity to calm him down only to have a spring-loaded lancet pierce the pad of one of his poor fingers.  It requires both Katie and I to hold Edward down while the nurse carefully 'milks' the blood into laboratory vial.  Katie and I were each fairly certain that his counts were going to be low again and delaying the upcoming cycle was inevitable - nevertheless, we held out a small ray sliver of hope, just in case.

A couple long hours later, I actually called the lab to get the result......880!!!!  We 'made counts', as they say!  We were all overjoyed and kind of surprised how excited you could get about being able to give your child chemotherapy.  He has a minimum of 6 cycles, each one month apart.  The effect of chemotherapy on the bone marrow can be cumulative, so at some point, we will likely to have to delay a few of the cycles by a week or two, but at least we will be able to get cycle 2 out of the way.  Katie and Edward are headed up to Philadelphia tomorrow (I have to work for this cycle, unfortunately).  He will have another EUA on Wednesday at Wills Eye to check on the progression of the tumors followed by his chemo infusions delivered at CHOP. 

Cycle two, here we come.