Tuesday, September 25, 2012

Next Steps

As Katie described in our last post a couple weeks ago, Edward has finished his six cycles of chemotherapy!  Since that last infusion 4 weeks ago, we have been monitoring Edward's blood counts as always.  Fortunately about two weeks ago, his counts seemed to have recovered nicely and we seemed to be out of the most susceptible period of immunosuppression.  In fact, his numbers looked so good 10 days ago, we actually didn't have to check his labs last week, marking the first time in over 6 months we went a whole week without a doctor's appointment!

Edward still requires regular eye exams with our ophthalmologist over next four years as there is a 20% chance that he will experience some degree of tumor recurrence.  Most of the time, these recurrences can be treated intraocularly with laser therapy, cryotherapy, thermotherapy, etc.   If that does not work, he may have to undergo implantation of a small irradiated plaque in his eye to help control tumor growth in addition to the local therapy.  If that does not work, we will have to consider the possibility of enucleation (taking his eye/eyes out).  A chilling thought after all that we have been through.  His chance of losing his right eye is only ~5% and the chance of his losing his left eye is a little higher at ~10%.  These numbers are low, but represent a very real possibility that we unfortunately keep in the back of our minds and in the bottom of our hearts.

Part of his surveillance also includes MRIs of his eyes and brain every 6 months.  He actually underwent his second MRI today under conscious sedation.  They did not have to intubate him and place him under general anesthesia which is always preferable.  He tolerated the scan well and we should have the final results on Thursday.  We are hopeful that this scan does not show any progression within in his eyes, but more importantly that it does not show any evidence of tumor spread to the brain.  Fortunately, the chances of this are much lower than enucleation (likely on the order of <1%, though I do not know the exact number).

On Thursday, we should also get one more lab draw.  Assuming his counts still seem to have recovered, this will likely be the last lab draw for quite a while.  This translates into possibly pulling the PICC line on Thursday!!  Though the PICC line has provided invaluable access to Edward's veins over the past 5 months, allowing us to give him the chemo + fluids and draw blood without a single needle stick, it has also been an incredible challenge to keep a rambunctious toddler from pulling his line out, dipping it our dog's water bowl or jumping in the mud with it.  Way back when our life had some semblance of normalcy, Edward actually took his first swimming lesson.  The next week, he was diagnosed with retinoblastoma.  Since then, he obviously did not get to jump in any wading pools or the ocean or take a bath that was longer than 3 minutes.  Suffice it to say, we cannot wait to wave good-bye to the PICC line.   We will let you know how Thursday goes!

Tuesday, September 11, 2012

Chemotherapy Complete!

Update, then awesome pictures......

Edward finished his chemotherapy on August 30th!   When we started this whole process Michael said, "I hope we can be finished with chemotherapy by Labor Day."  Well, did we come down to the wire or what!  Eddie was his usual crazy, "wild man" self, as they call him up on the oncology floor.  "Wild man" in a good way, I think!  The nurses and doctors have been stung by the lovebug himself, and were cheering him on and congratulating us on this huge milestone.


Well, unfortunately, this type of cancer is not a "go into remission" type of cancer.  He has a mutation on the RB1 gene on one of his chromosomes.  We had genetic testing done to confirm this, and Michael and I were also tested.  Neither of us had the mutation.  SO Edward's circumstance is just pure bad luck.  It has nothing to do with his prematurity.  In fact, his early delivery probably helped him in the fact that we followed up with the NICU eye doctor and had an early detection of this cancer.  If we had another child in the future, the baby would have a less than 1% chance of developing retinoblastoma, but lets leave that talk for the future, as the present is as busy as it can be!

Now, we will continue to use the PICC line in his arm for blood draws at the hospital twice a week to moniter his counts- platelets, hemoglobin, neutrophils, etc.  We had been giving him the Neupogen needle at home, off and on, according to his lab results.  This is to prevent him from being hospitalized again for an infection that his little body and worn out bone marrow can't handle.  He has an MRI schedule for the 25th of September to check his brain and make sure nothing has spread.

Dr. Shields was happy with his last EUA (Exam Under Anesthesia) and said that both tumors, the large left tumor, and the small right tumor, were slowing turning into scar tissue.  The first full year after chemo will be the most telling of Eddie's future.  We will continue to travel up to Philadelphia to go to Will's Eye until Ewdard is 5.  Yes, 5 years old.  Did I really say that?  Yes, the retina cells in this situation can still turn into cancer cells until a child is about 5 years old.....He will have an EUA once a month, or every two months, or three months, or four, or five months - it all depends on what the previous exam shows.  Sometimes, the tumors produce seeds, or tiny small baby tumors, that Dr. Shieds will treat with laser therapy.  On average it takes three laser treatments in a row to kill a seed.  So we will of course, hope for no seeds.  Then, another thing we keep in mind is that the tumors could start to grow again.  We will pray that doesn't happen either.  He will also have and MRI every 6 months.  Dr. Shields gave us a "2 month pass" and we will see her in October.  Now with chemo finished and behind us, we are entering the world of uncertainty, the watch and wait period.  I have to say, as his mother, this scares me the most.  While getting chemotherapy I felt empowered, like we were "fighting" this stupid cancer.  Now, I can't help but feel a bit vulnerable as we wait for that next appointment.  And the next one..... and on and on it goes....

And lastly, the RB1 mutation leaves Eddie susceptible to other cancers later in life, especially osteosarcoma and melanoma.  Michael and I received this news a long time ago and have waited to really even say it out loud to anyone because it was just too much to think about.  More cancer?  A lifetime of cancer?  Well maybe, and maybe not.  We have realized that Edward is oblivious to his plight, and while we are not, we need to keep him that way for as long as we can.  He is smart, funny, mischievious, loves to wrestle with Daddy every night, keeps me on my toes (ALL DAY LONG) and loves anything silly.  SO we will continue to hope for the best, pray for things most important, and live life one day at a time.  AND cheer for the Irish, of course!