No News, is Good News. And Good News = Party Time!

We are so sorry that this blog has not been updated since Edward's MRI results.  Everything has been going well.  Edward was scheduled to see Dr. Shields at Will's Eye Institute in Philadelphia on October 24th for his 1st eye exam post chemo.  To say the least, my nerves were shot and I almost had a nervous breakdown the night before.  His bags were packed, our coffee cups were out and ready and little man was alseep.  I was suddenly left with 2 hours with my parents to watch t.v. and do nothing until it was time for bed.  I tried to put on a happy face, but suddenly burst into tears.  My dad even got me a Blue Moon to drink with him and talk, and I was crying so much that I was snotting all over my beer I couldn't even drink it.  I wanted to write this to you all, because I know our little updates are always so optimistic.  I know sometimes we sound like everything is fine, and we are just the cutest, strongest family.  But, the reality is that we are NOT, and the only way we continue to get through this situation is by the help, support, and prayers from you, all of our friends and family.  I was just so incredibly scared, and I had this terrible gut feeling that the cancer was spreading and we were about to walk into a chaos we have not yet seen.  Do I have anxiety?  YES.  Is it somewhat expected? YES Am I going to be constantly worried about losing my little boy? YES.  And I just don't know how to calm these fears, but to put on a happy face. You know " Keep Calm, and .........."  I don't really know how to finish that sentence!  SO I just wanted to say to you all who probably think I am naive and overly optimistic through this difficult time, that we truly have our constant worries, we always have the worst thoughts in the back of our minds, and we have no one else to thank except the Lord, our friends, and our family, for pushing these bad thoughts away at the darkest of times, and renewing our sense of hope.  Without hope, we have nothing.

So, the next day after crying myself to sleep, we arrived at Will's Eye (me, my mom, and Eddie) to hear the most unexpected news.  ALL THINGS ARE STABLE!   Stable is what we need to hear.  and to top that off, no treatment (laser) was needed.  He basically just had an eye exam under general anesthesia.  Could I really believe this?  I totally tricked myself into believing that we were going to hear bad news that I was speechless.  Dr. Shields looked me in the eye and said, "Mom, it is time to start enjoying toddlerhood."  When she said that I immediately burst into tears.  I have a toddler?  I thought I just had a baby with cancer!  Oh yes, we DO have a toddler! Anyway, both tumors were STABLE, meaning there was no re-growth or seeding (seeding is when the tumor produces and spits out baby tumors within the eye).  Both things I was expecting to hear.  I absolutely could not believe this news.  Now, here I go again on my pessimist/realist outlook, that we certainly could here that news in the future, but as of right now, we are stable.  We received a 2 1/2 to 3 month pass from Dr. Shields, meaning we do not have to come back until mid January. Can u believe it?  She did get on me about patching and Eddie wearing his glasses.  Both the patching of his good eye (to make his brain use the muscles in his weak eye) and the wearing of the glasses (for protection of the good right eye) are worthless moments at the Johnson household.  He screams, yells, and rips off the patch or the glasses within a nanosecond of putting them on....... We have some work to do.... Time for some tough love Edward.

Also, Edward survived his first cold and horrible cough of the season, and he even recovered on his own without any medications (don't worry though, it's not like we didn't freak out!  I had Michael check his lungs everyday, as well as Papa Johnson when we were in Augusta, and I propped up his mattress so he was sleeping on an incline, and I bought a Vicks Vaporizer that we used for a week straight! Overall, we were surprised, and relived that his little immune system was able to recover on its own.

On another note..... NO. MORE. BOTTLES!!!!!  What a milestone.  I don't know who is happier, me, Eddie, or Mike!!!  Ahhh it has been a somewhat smooth transition so far, and we have been bottle-less for a week now, and little man has not even asked for one.  So, pumped!  NO. MORE. FORMULA!  Enfamil Enfacare, you did your job for many months, but I am not sad to see you go.

So, the last two weeks were spent traveling.  We spent a week in Doylestown with my parents for his eye exam.  Then, Eddie and I drove back to Charlottesville, only to spend one night sleeping in our own beds, to then pack up and leave the next day (this time with Daddy!) to go to Augusta, GA for a week to spend time with the Johnson side of the family.  Eddie had a blast!  Here are some picture, hopefully in order including Doylestown pumpkin patch, playing with his cousins in GA, Halloween with the Johnson clan, and topping it off by enjoying Aunt Christine and Uncle Conrad's wedding.

 Reading with Uncle Danny before bed!

 Me, Eddie and Daisy!

 GOoooooooooooooooooo IRISH!

 "Mom, I want this one!"  Ummmmmmm no!

 Oooooooo scarey!

 CHEEEEEEEEEEESE!

 A tractor and a giant pumpkin, just what a little boy wants to see :)

 Whoa! PUMPKINS!

 Farmer Eddie!

 Walking Daisy all by himself.

 So proud of himself!

 Trying to hook her leash on her tail! haha

 Awwww!

 Pet number 45 of the day!  He loves her!  And she tolerates him!

 Hi Grammy!

 Hanging out on the front lawn.....

 Haha!

Again, he is hooking her leash to her tail! Daisy you are sooooo good!

 Holy pumpkin!

 "Mom, why did you make me sit here?"

 SCARECROWS!!!!!!!!

 Mmmmm!  Yummy!  Mini-pumpkins!

 Walking with Grammy....

AND, here we are in Augusta, GA........ Two cousins riding around.  Cameron was so sweet and held Eddie's hand as he drove around!  Sweet boys!

And now, HALLOWEEN!!!!!!!!!!!!!!!!!!!!!!!!

Christine and Conrad's Rehearsal dinner......

 Michael and Conrad, the excited Groom!

AND, the wedding!!!!!!!!!!!!!!!!!

 Eddie is thinking "Give me that crown of flowers!"

 Me and Granga :)

 Cheers!  Happy Wedding Day!

 Happy Parents!

 The Bride and her bridesmaids........

 Michael, being sweet enough to hold my flowers :)

 The prettiest flower girl around town.....

 Michael trying his best to keep Eddie quiet during the ceremony......

 Johnson boys, the flower girl, the ring bearer, and the alter server!  What a crew!

 Anne Marie and Stephanie, 2 pregnant bridesmaids, toughing it OUT!

The Johnson girls...................

MRI Results

Sorry for the delay in this post, but we got our MRI results last week and everything looked stable.  We monitor the tumors in his eyes closely with Dr. Shields in Philadelphia and use the MRI to check for extension of the tumor into the pineal gland - part of the brain.  The chances of spread to the brain are very low, but if this does occur, the consequences are devastating.  Fortunately, the MRI showed no evidence of any tumor spread to the brain.  The MRI cannot obtain a very precise picture of the tumors in his eyes, especially in comparison to the direct eye exam.  But at the same time, the MRI can show if the tumor is extending backwards, towards the brain.  Again, fortunately, there was no evidence of this either!  All in all, very good news.

With the MRI results in hand and his blood work coming back with good results, Edward's oncologist felt comfortable pulling his PICC line!!  Five months ago, Edward underwent general anesthesia to have the PICC line placed - we were finally going to get it out!  Taking the PICC line out is much easier than putting it in and it only took Edward's nurses a couple minutes before it was long gone!  As always, Edward did not seem phased at all and kept going about his business.  But at bathtime that night, he realized something was different.  Katie was actually filling the tub up with water - something that had not been done since April.  Edward was so excited, he tried to jump in fully clothed.  Forty-five minutes later, every single one of Edward's fingers were soaked and wrinkled.  As Katie tried to get him out after nearly an hour, he kept yelling "No!....No!....No!"  Eventually, she coerced him out, but bathtime has transformed from a harried 2-3 minutes to 30-45 minutes of pure joy.  After we eat dinner, Edward will now start running up the stairs to get a head start on his bath.

The next step is another eye exam under anesthesia in Philadelphia at Wills Eye on October 24th.  The first year after chemo is very telling and we are hopeful that we are able to avoid the 20% chance of tumor recurrence.  Edward will not need another MRI until March 2013.

Carter's Mountain with Grammie and Papa Johnson- Apples, Pumpkins, and Apple Cider Donuts!

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!

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.

NOW WHAT?

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!