Grace!

" Life moves pretty fast. If you don't stop and look around once in a while, you could miss it."
                                                                  - F.B.

Two months ago to the day, Katie and I received the news of Edward's most recent challenge and the past 60 days have been a rollercoaster of emotions and an absolute whirlwind of events.  However, with the help and support of all of our family and friends (and an occasional cold beer at the end of the day), we have seemed to weathered the first part of the storm.

Since the completion of his second cycle, we have been quite busy to say the least.   Edward has continued to amaze us with his strength and resiliency.  Despite the chemo, Edward keeps charging forward both literally and figuratively.  He loves to stand, crawl, play and explore; he is also very close to walking on his own.  With all of this adventure, he seems to acquire a new bump or bruise every few days, though he seems unfazed by it all. 

Edward continues to have his weekly CBC drawn to monitor his blood counts, most specifically his neutrophil count.  We need 750 neutrophils to move forward with each cycle.  He just barely made counts for his second cycle and we have been quite nervous about making counts for this next one.  The effects of the chemotherapy on the bone marrow can be cumulative as he continues to receive his treatments, thus potentially leading to a more profound suppression of his cell lines.

One aspect of Edward's care that has proved somewhat challenging has been insurance.  We were referred to both Wills Eye and CHOP because they are two of the best centers in the world in treating retinoblastoma.  We knew that Wills Eye did not take our insurance, but we under the impression that CHOP did.  Unfortunately, during cycle 2, CHOP informed us that they actually did not take our insurance.  Bummer.

After much prayer, consideration and multiple discussions with both of our oncologists and ocular oncologist, we elected to continue to receive care at Wills Eye, but transition our chemotherapy back to UVA.  Both the UVA peds-oncology and ophthalmology departments are excellent, but they just do not see a lot of retinoblastoma due to its rarity.  But the treatment regimen of vincristine/etoposide/carboplatin is the same at both locations, so we both felt very comfortable getting those infusions here as did our oncologists. 

One of the bigger differences between CHOP and UVA is that UVA prefers to establish 'central access' in their chemotherapy patients - i.e. they like to place a permanent type of IV that allows them to deliver the chemo to the larger veins in Edward's circulation.  Thus, Edward had to have a PICC line placed (PICC = peripherally inserted central catheter).  The PICC line is a small thin rubber tube that enters the inside aspect of his right bicep and then courses up his arm and into his chest.  He yet again had to go under general anesthesia to have this placed as keeping a 1-year-old still for this type of procedure is impossible. 

The PICC line has its advantages and disadvantages for sure.  The good news is that as long as it is working, Edward will not have to have any needle sticks for blood draws or infusions.  Considering how many IVs he has already had and how much he hates his weekly lab draws, this is a huge plus.  On the other hand, keeping an external catheter clean, dry and intact with a curious, mile-a-minute 1-year-old is a unique challenge in and of itself.  Additionally, we have to 'flush' the line everyday with saline (salt water) and heparin (an anticoagulant) to help keep the line patent.  Again, not exactly a cake-walk with a squirmy baby.   But the worst part is bath time.  Previously, a highlight of the day for the whole Johnson family, bath time is now a quick angst-ridden 3-4 minutes of trying to clean Edward while keeping a saran-wrapped-around-a-wash-cloth-over-the-PICC line dry!  Whew. 

Another disadvantage to the PICC line is its associated risk of infection.  Anytime anything breaks the barrier of the skin and enters your bloodstream, you are at risk of developing a fairly serious infection.  Throw in the fact that Edward is neutropenic (immunosuppressed) and the risk is quite high (though thankfully, still unlikely).  Meticulous attention to keeping the PICC line clean and using good hand hygiene on our part will minimize Edward's risk, but certainly not bring it to zero.  Should he develop a fever, he would likely need to have the PICC line pulled and another inserted. 

On the bright side, Edward got to visit with the Johnson side of the family last week, as my little sister got married.  He loved all seeing his grandparents, all of his aunts and uncles and meeting many new cousins.   He certainly does not shy away from attention at this point in his life!

So, how are those neutrophils?  Well, last week we had our weekly lab draw and unfortunately, his neutrophil counts was even lower than the previous week - all the way down to just above 200.  We were scheduled to have his eye exam tomorrow at Wills Eye under anesthesia followed by a furious trip back to Virginia to get chemotherapy the following day, but we were afraid we were going to have to delay by a whole week based on his low neutrophil count.  Our oncologist decided to check another CBC yesterday just to see if by chance they were above 750 and we could keep moving forward.

No luck.  650.

But they were higher....much higher!  In fact, after some deliberation, they allowed Katie, Edward and her mom to head back up to Philly to have his treatment tomorrow with the hopes that by Thursday, his counts will be above 750.  Considering that his counts almost tripled in three days, we are hopeful that we can gather a measly 100 more neutrophils by Thursday.  We will let you know how it goes!