Thursday, August 30, 2012

Quick Update and More Golf Pictures!

Today was a joyous day because...... Edward "made counts" with a crazy 1,770 neutrophils!  Thank the Lord!  Praise the Lord!  We are so close to finishing the chemo part of this journey, and the horrible/wonderful PICC line part of this journey.  The chemo is obviously working, but I hate days like today when I watch him turn pale, nauseous, angry, and upset during his infusion.  He becomes terribly clingy, making this a long and exhausting day for Mommy.  And the PICC line is wonderful because it has allowed his weekly blood draws to be painless.  No sticking his veins a millions times for an IV, but also, no swimming, no getting wet, no splash parks, no water tables, etc.  NO normal summer activities for a little boy.  And he definitely has "found" his PICC line (along with other body parts :) ahhhhh little boys.....) but he absolutely hates it and tries to rip it out of his arm, which is why he always has a long sleeve on his right arm.  Quite a few times I had to pull over on the side of the road because I saw him in the mirror slowly unwrapping the tape and begin to chew- yes, I said chew, on the line.  Oh the joys..... But we will not miss flushing his line every night with saline and heparin, and we will not miss wrapping his arm in press-n-seal cling wrap before his bath.  I will not miss having small heart attacks as he tries to put his hand in Winston's water bowel.  Haha, the list could go on and on, but I said this is a quick update!  And he is sound asleep next to me in his hospital crib, so I better hurry and get this posted before my typing in the dark wakes him up. Excuse any typos, as I am literally sitting here in dark.....

But today was a good day.  The nurses were super quick and efficient.  Everyone on the oncology floor was cheering for us and giving us hugs as they also realized that this is Edward's last cycle.  We have a 1 hr. infusion tomorrow around noon, and hopefully we will be discharged and resting at home in the early afternoon.  And how will the Johnson family of three be celebrating this tremendous milestone?  We will wake up on Saturday morning and watch Notre Dame beat Navy in Dublin, Ireland.  We have our game day shirts ready.  Instead of praying for neutrophils, I think we might be praying for some touchdowns!  Go Irish!

And here are more great pictures of the golf tournament last week.

 Papa, Uncle Aaron, Daddy, and Uncle Matt
 So happy that we could make it this week, and were not in the hospital!
 Cruising around the course, and no Eddie, they do not sell these cars at ToysRUs.
 Thank you for sponsoring this hole Uncle Glenn and Aunt Dottie!
 Looking like a natural!  Great job Michael!
 Thank you for sponsoring this hole Uncle Harry and Aunt Jackie!
 Uncle Aaron putting on the 18th green!
 Edward getting a pep talk from Uncle Matt!
 Four hours later, we all look a little bit.... tired! And Edward Michael Johnson, where is your hat young man?
 Thanking Emily with beautiful flowers from Bluebell Flower Shoppe.
 Telling everyone how incredibly grateful we were to have this special day devoted to pediatric cancer and our sweet boy.
 There is a look of mischief on that face.....
No shoes, no hat, walking around like he owns the place..... WHY am I surprised?

Wednesday, August 29, 2012

A Hole in One!

The golf tournament at Whitemarsh was an absolute success!  We want to thank everyone involved, especially Emily Gimpel and her wonderful family, the organizers of the tournament - the whole day could not have gone any better.  We also want to thank everyone who played in the tournament and everyone who donated gifts.   A fantastic time was had by all.  I even played golf.  Luckily, Edward is much tougher than his father is skilled at that game.  I don't think Katie needs to worry that I might one day chase a dream of joining the PGA anytime soon.   Thankfully, my father, brother and brother-in-law, who traveled up from Georgia to play in my foursome, carried the team!

This next part is going to be challenging for me, but here it goes:  Go Phillies.  There....I said it.  As a lifelong Braves fan who can still name the starting 1991 Atlanta lineup, marrying a Phillies fan has its "moments".  But one of the coolest moments of the day came courtesy of Phils.  Katie's mom uses the  Bluebell Flower Shoppe for all of her 'florist needs' and the store was kind enough to support the golf tournament with pamphlets at their cash register and a tip jar with Eddie's story and picture on it.  Lo and behold, a certain Philadelphia Phillie is getting married and his fiancee saw the pamphlet and inquired about Edward each time she came into the store while planning the flower arrangements for the upcoming nuptials.  Edward's story must have made an impression because the next thing we knew we had an autographed baseball by this player for the auction at the tournament as well as an autographed Philly Phanatic with a personal message to Edward to stay strong.  We were beyond overwhelmed.  The player?  None other than the 2005 NL Rookie of the Year, 2006 NL MVP, 2008 World Series Champion and current first baseman for the Phils - Ryan Howard!  Even as a Braves fan, I was amazed and in awe.  I will note that Mr. Howard made his major league debut against the Bravos in 2004 and struck out.....but since, he was absolutely terrorized the Braves and the Phillies (aside from this year) have been the team to beat in the NL east.  So, I will say it one more time....Go Phillies.  Thanks Ryan!!!!

On a more serious note, we had another eye exam under anesthesia (EUA) in Philadelphia today to check on the status of the tumors.  The days preceding these EUAs are always a little nerve-wracking.  Katie has joined a couple facebook retinoblastoma group pages to stay in touch and learn about other families dealing with Rb.  Overall, it's a very good thing, but every now and then, some children will need to have their eye taken out after an EUA showing marked tumor progression.  We all worry that his EUA will show a lot of tumor growth and that we will suddenly find ourselves signing a consent form allowing Edward's doctors to take out one of his eyes.  These are not pleasant thoughts and we try to stay positive, but of course your mind wanders at times.   

The EUAs are actually fairly quick procedures, on the order of 20-30 minutes.  But the whole process takes a minimum of 4-5 hours and can take even longer depending on what time we are scheduled, traffic and how long the surgeries before Edward take.  After navigating I-95, parking garage, registration, waiting room, pre-op and then back to the waiting room, we are brought to the debriefing room, where our opthalmologist, Dr. Shields, gives us a report of her findings.  Needless to say, the few minutes we are in the debriefing room before the surgical team arrives feels like hours.  We hope for good news each time, but we all keep a small part of our hearts and minds prepared and ready to hear the worst.  Luckily, as we have each time before, we recieved more good news today!  Both tumors show no sign of progression or extension.  The tumors have not shrunk tremendously, but they are regressing in a typical pattern.  In fact, they are so pleased with his eyes that our next exam in not for 2 months!!  The goal is to be able to space out these exams as much as possible, so going from 1 month to 2 months is a big step in the right direction.

We are back in Virginia now and will have a CBC tomorrow to check on his neutrophil count.  On last check on Friday, his neutrophils were only 500 or so.  We need them to be over 750 to receive chemotherapy, so say some extra prayers tonight that his bone marrow can churn out a few hundred more neutrophils so we can get cycle 6 completed!  We will let you know how it goes!  Here are some pictures of the recent golf outing! 

 Practicing the day before in the backyard...... not exactly sure if it was successful.....
 So stinking cute... enjoying his time OUTSIDE!
 Beautiful flowers at Whitemarsh Valley Country Club.
 Perfect weather for golfing!
 Pop-Pop, Uncle Danny, Uncle Brian, and Uncle Bob are out there somewhere!
 Meeting Emily, the organizer, for the first time.
 Almost whacked her in the head with his golf club.... not sure how long he is going to have these clubs!!!!  They might disappear.  Shhhh!
 Awww!  Thank you Ryan Howard and Krystle Campbell.... Congrats on th eupcoming wedding!
 Oh hello Phanatic! I love you!
 Emily, my mom, me, Eddie, and Sr. Kathleen Brabson
 Awesome flowers from Bluebell Flower Shoppe!
 Very yummy cake, and the cutest teddy bear around!
 Finished!  Exhausted golfers.....
 Eating a nice lunch after 18 holes!
 Thank you so much for coming!
 My Mount St. Joseph girlfriends and their babies!  Thank you girls for coming.  P.S.  Edward came home with a yellow/green truck that is NOT his!  Anyone missing a toy?
"Driving" with Miss Emily!  He thought he was actually driving and  he thought he was so cool!  We were trying to find Daddy, Uncle Aaron, Uncle Matt, and Papa Johnson!


Wednesday, August 22, 2012

Tournament Time

Since completion of cycle 5 in early August, the Johnson household has been busy!  Despite all of the obstacles placed in front of him, Edward is a growing boy that does not understand what the words 'fear' or 'limits' mean - which leads to several new bumps and bruises every week for him and few more gray hairs for us.  His new favorite activity is watering the plants on the front porch with Katie.  This generally devolves into Edward watering himself and smearing mud across his face.  He (and we) loves it.

Given the significant delay in between cycle 4 and cycle 5 from his low neutrophil count, we had to give him daily subcutaneous injections to stimulate his bone marrow.  Not surprisingly, he does not love these shots as much as he loves watering the plants.  On the bright side, they have certainly kickstarted his bone marrow - we had a record high number of neutrophils last week: 14,000!  That number is much higher than needed and is a little inflated from the shots.  Since holding the medicine, his neutrophils have drifted down to 970 over the past 7 days.  We will keep a close eye on his labs, but are quietly confident we should have plenty for next week for his scheduled chemo.  He has an appointment 1 week from today with Dr. Shields for an eye exam under anesthesia to check on the tumors, followed by chemotherapy next Thursday and Friday at UVA.

In much more exciting news, we are actually spending this whole week in Philadelphia with Katie's family.  In even more exciting news, Edward has been chosen as the guest of honor at a local golf tournament for pediatric cancer.  Junior Golf Clubs Cancer (JGCC) was established in 2004 by some local junior golfers and their families at Whitemarsh Valley Country Club after cancer struck some of their families and friends.  They originally sold donated golf clubs on Ebay to raise money for pediatric cancer, but since 2007, they have held an annual golf tournament to spearhead their fundraising efforts.

We are incredibly fortunate that Edward was selected as the 2012 special honoree for this tournament which is scheduled for tomorrow at Whitemarsh Valley Country Club.  Some of the founding members of JGCC went to the same high school as Katie and her two sisters (Go Mounties!).  We have over 70 golfers signed up for tomorrow and a tons of great prizes available through the silent auction.  We are so grateful for all of the love support from what seems like the whole city of Philadelphia!  My brother, father and brother-in-law are flying in today and much of Katie's extended family and friends will be playing as well.  Even Edward has his own set of plastic golf clubs.  Maybe we can keep secret how terrible at golf I actually am.  Check out the JGCC facebook page and feel free to bid on any of the items!

While practicing his golf swing, Edward got into a box of Pops cereal the other day.  Thank goodness for vacuum cleaners (and dogs)!

Wednesday, August 8, 2012

Mommy's Little "Helper"

Well, cycle 5 of chemotherapy is complete!  We finally made counts last week and were admitted for two days.  I have to admit, it is getting harder to be in the hospital with Eddie, not easier!  We have all of his necessities packed and ready (food, toys, games, etc.) but what we were not ready for was his crazy, rambunctious, non-stop, always on the go, self.  When we first started chemotherapy in March, he was not walking...... now he is running, climbing, tumbling, you name it, he will try it.  In fact, he has been discharged from Infant/Toddler Connection in Virginia because he has met all of his physical therapy goals, with flying colors!  Go Edward Go! And being hooked up to an IV pole for 48 hours with only about a three foot radius to run around in, is... well, terrible!  This last time, my mom, sister, Mike, and I had to get up and literally jump to grab him before the PICC line was ripped out of his arm.  We "saved" the PICC line so many times it was useless and unnerving to count. Please PICC line, keep yourself inside Edward's right arm for a little longer, about 6 more weeks, please?  He likes to dart this way and that way, especially during the one second you are not paying attention to him.  The chemotherapy infusion of all three drugs is only about three hours long, but he is hooked up to fluids the entire hospital stay.  Our nurse the second day said, "Well why don't we just unhook him so he can go to school and run around."  Well, nurse_______  I had my doubts about you a few hours earlier, but when you said THAT, confidence was restored :) Yes, there is a little school at the hospital and Mrs. Chelsea (LOVE HER!) runs the room for ages 2 and under.  He ran into the room screaming " Yay! Yay! Yay!" because he loves his teacher and he knew he was UNHOOKED!  Thank goodness for hospital "school" and the one hour he gets to be a normal kid.  It melts my heart every time. The other two sweet children were sitting nicely on the mat with Mrs. Chelsea, basically play Pat-A-Cake song but my lovely son was running around the room in circles, trying every toy for about ten seconds, only to throw it, then move on to something else.  Many moms just leave their children and go grab a coffee or take a break or something, but I DONT.... haha, because I am a former teacher and I KNOW my wild man. And I know Mrs. Chelsea is probably thinking, "Please don't leave me, please don't leave me!" Haha.  We appreciate his spunk, and understand that we MAY find ourselves in the principal's office more than once as our darling child grows up........ But, our only wish, is that he surpasses this ridiculous obstacle and gets the chance to grow up.... enough said. (P.S. Blame me.... I am the hardcore, scary, strict, homework every night, 5th grade teacher gone softy).

And since we have been home, Eddie is doing great!  We have had a few nauseous days, but no vomiting.  Eddie was started on Neupogen at home to boost his white blood cell counts.  A friend described Neupogen to us as Red Bull for the bone marrow, and so we have been giving him a needle every night.  Yes, a needle, you heard it, a needle, a shot, an injection.  At this point, Mike and I are like "Whatever, no problem, sure we can do it at home." But Eddie has been taking it fairly well with a few cries, a whimper, and then he gets back to his smiley self pretty quickly.  His counts were high enough that we got permission to stop the Neupogen for a while, and we have a CBC at 10:00 a.m. tomorrow, so we will see what is going on inside his little body.....

And so here are so pictures of Edward doing his thing, being my "helper".....
I bought this broom at the toy store in town, because ever since he found my broom, he is obsessed with sweeping!!!!  The only thing he does with the broom is try to knock Winston in the head with it!!  Poor Winston, you have been so good lately even though Eddie is being a stinker.
Sweeping and pooping, pooping and sweeping!
"Cool, Mom, I love this Dirt Devil!"   (This picture actually looks like he is using it correctly, but 99% of the time he just carries it around, vacuuming nothing, nothing at all.)
"Oh wait, I see a Cheerio, oh, wait, I think I will eat that one."
"Mom, I think this thing is out of battery. It stopped." ( Mommy in her head shouting, "Thank God that thing is finally out of battery.")
Bubble mowing the "sidewalk."  Yes, definitely helpful. The neighborhood association is absolutely 100 % appreciative.
Oh wait, we found the grass.... the neighbor's grass... oh well, we will call this a success!
Picking up sticks is definitely a way to help Mommy.  Although, picking up your toys would be even better.  HINT! HINT!
Oh, and he is off again!  Man that sidewalk looks beautiful Edward!
Watering the plants with Mommy.... A.K.A. Dumping his water out all over the place and splashing around in it as Mommy checks his PICC line a thousand times to make sure it is not wet..... Ahhhhh the joys of the Mommy's little helper days.

Are there child labor laws in Virginia? Well, you would think with all of this "help" our house is pristine and clean!!!!!!!!!  Yeah right......... When Mike and I first found out we were pregnant we were talking and laughing and guessing about what the future might bring.  And I said, "I just can't wait until the back of our car is filled with Cheerios."  ha...... ha.... ha...... ha..... ha..... ha....
HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!!Still laughing as I drive to the nearest Jiffy Lube tomorrow morning to vacuum out our car.