The Calm Before The Storm

May 26
Honestly, I do not have much to say tonight.  We're just gearing up for Blaise surgery tomorrow.  I wanted to find a way to update everyone on the fly as we go through the day, and I think I found the best way.  Along the right hand side of the blog you should see my Twitter feed.  As I tweet, it will show up there, just not on the mobile version.  If you're on your phone and cannot see the Tweets on the right, scroll to the bottom of the page and click "Full Web Version.". Please come back to the blog as Friday passes, you should see updates there on the right side!  If not, text or call me!  Annie might not want to talk, but I am sure I could use the distraction!
Blaise is in good hands, and has great people holding him in the light!  He will pull through this surgery fine, but pray for Annie and I.

I was reminded the other day by my Godmother, Aunt Theresa, that Blaise was baptized on May 27.  And you can all see that in the sunglasses pictured above.  That's his official Baptismal Certificate issues by Pope Benedict XVI.  I guess there is some special meaning to this date.  And if this is one way God is telling me he is going to be OK, then I am all in.  At the very least it is kind of cool.  So the 50 or so people that gathered in St. Agnes chapel in Cape May Point 4 years ago, or partied in Sea Isle with us afterwards, wear your sunglasses proudly tomorrow and think of Blaise.  And of course, enjoy a drink at the Carousal for us all, it is one of Blaise's favorite spots!

While we will certainly miss the shore this weekend, there will be time for that in the future.  Annie and I took the kids down last weekend, because who likes crowds anyway!  We had some tough weather, but had fun and enjoyed the rides and OC Boardwalk.  It's funny because Blaise hates the rides and the beach, while Lucy loves every minute of it.  They could not be more opposite, but more caring for each other.  As Lucy and I rode the Merry-Go-Round, she was on the lookout for Blaise and mom watching.  She's always wants him to join in, and he always wants her to be save!  He did not want Lucy to go near the water.  The are very complimentary of each other.

So follow along, keep us in your prayers and enjoy your holiday weekend!  I will leave you with the words of the Boss.

Hard times, baby well they come to us all

Sure as the tickin' of the clock on the wall
Sure as the turnin' of the night into day
Your smile...
Lifts away the blues when I rise...

I'm waitin', waitin' on a sunny day
Gonna chase the clouds away
Waitin' on a sunny day

As I sat in the Wells Fargo Center right after Blaise was diagnosed, the Boss and the thousands of fans were a welcome distraction.  A good friend once spoke about the magic of Bruce show, and I believe that.  So tonight I sit here listening to "Waitin on A Sunny Day," and I am thinking about those days to come.  The Boss finds a way to do that.  Blaise is going to crush this surgery, and this stupid disease.  Annie and I, with your help, are going to get through this with Blaise.  And Lucy is always making it a sunny day.  Thanks so much for everything, and please know we are praying for all you, and wishing the best for everyone.  Tomorrow is about the rest of Blaise's life, and may it be as long as John Davis Sr.'s or Moses' whichever was longer!

T-Shirts

Orders end next Wednesday.  If you want one, order it now!  

FYI - They do shrink in the wash!  I know that!

CLICK HERE TO ORDER

T-Shirt Order

Now Taking Orders!

Get your very own shirt in support of Blaise!  Orders are being placed in 1 week, so get them while they're hot.  Great for the beach, pool or backyard BBQ.  They also make great birthday, holiday presents!  Buy one for everyone you know.
These shirts are not a fundraiser, but everyone seemed to really like them so we wanted you to be able to get them.

Here's Blaise wearing his shirt with his dad, and some other guy!

Fo - Fo - Fo!

For those of you that have not heard Blaise's mid-point surgery has been postponed.  This was upsetting news at first for a few reasons, but we were assured this afternoon that is will have no impact on his overall outcome, and that is getting us through this.  He is now scheduled to go under the knife on Friday 5/27, a great start to the summer!

I am going to put this into perspective as only I can on this of all nights.  Even though it was before my prime, or even existence, I have been thinking about Moses today, Moses Malone.  Before the 76ers last championship he predicted a playoff sweep with his famous "Fo-Fo-Fo," quote.  Not only was he predicting a championship, but he was predicting no loses throughout the playoff run.  Well, Blaise was doing that.  He was sweeping chemo, and everything was pointing towards a "Fo-Fo-Fo," of his four year old life.  Well those Sixers did lose a game.  But they won the championship too!  One lose did make it any less memorable or any less of an accomplishment, especially considering the slop we watch now.  Well Blaise has had his lose, no big deal.  So like in 1983 "Fo-Fo-Fo," turned into 'Fo-Fi-Fo," we see the same thing with Blaise.  He swept the first round of chemo, took a hit with the surgery, and he'll sweep the remaining chemo,  a championship in its own right!

How did we get here...
Annie took Blaise in on Monday for his routine lab check and he spiked a fever.  This happens.  He gets fevers during off weeks, they treat them and we move on.  No big deal.  Annie has been amazing at staying on top of these things and really it is her hard work keeping him on track.  She is Blaise's Billy Cunningham! (Side note: How many old school Sixers references can I fit into one post...)
So they were going home, when Blaise had some issues.  And when he looks back on this blog in years to come will love to read this part!  He had an accident in the pharmacy, but it was not just an accident.  I know there is some medical term Annie and the group used, but he started to have what I can only describe as convulsions.  He was shaking, crying and his feet, hands and lips turned blue.  Needless to say, since this happened good thing it was in the hospital.  Annie called me, I left work and came down to meet them.  Blaise was admitted to the floor.

Once I got there he looked OK, not great but OK.  He asked for some Cherrios and we obliged!  One bite in, boom goes the dynamite!  The same episode played out in the hospital room.  Now this is serious, WTF!  Blood was drawn, stool samples collected and test run.  As this was playing out, the team (with Annie's gentile encouragement) decided that a move to ICU would be a good move at this point because we did not know what was up.

Some quick tests showed us he had an infection, which we were treating that never got better or just came back really quickly.  But we were waiting a while for the blood tests to come back.  In the interim they hung fluids and gave him some blood.  After some tense times, and every changing blood pressures, Blaise came out on top.  He was just pretty badly dehydrated.

Annie went home because she had a rough go watching all this, as anyone would.  And Blaise and I had a sleepover on the 7th floor.  The same view, just a little higher up.  He slept great and woke up feeling like himself.  He finally crushed those Cheerios (we got him a new bowl).  And was taking all calls this morning.

Surgery

Yesterday, it appeared surgery was off the table for tomorrow.  He looked pretty bad.  Today it looked like surgery was back on the table.  He looked pretty darn good.  But ultimately, it was decided not to put Blaise through the trauma of an all day surgery after the trauma of yesterday.  This was disappointing news, but upon reflection it is the right thing to do.  It means he will be off chemo for another week, but it appears that is not a HUGE deal.  Blaise's oncologist assured us of this and reminded us how small the tumor was and how great he's been doing.  So it's good, but not ideal.  These are things we have been told to expect, but have notseen.  So it happened, we regroup and move forward,  Blaise is doing great, and we have one more weekend to enjoy with him at full strength!  Any suggestions of things to do? 

Sunday

A Special shout out to Mr. Kerins, Joe Kerins founder of Wiffle Fall Classic and Beer Pong Extravaganza!  He raised some money at an event for childhood cancer and shaved his head for Blaise.  We had fun morning at Lincoln Financial Field watching Joe get rid of the little hair he had left!

Saturday
Another big time shout out to Uncle Bob, Bobby Davis graduated from the University of Pennsylvania Gradutae School of Education with Doctorate in Education.  That obviously big news, but in bigger news it is first degree not from The University of Scranton.  So great job on finally branching out Bob and trying new things!  Send him a congratulatory follow @RWDavisJR

The party gave Uncle Don a chance to catch up with buddies.  Annie thinks this picture looks like a scene out of the Godfather...

Oops!
In the last post, I forgot to mention a great visit Blaise had from some really cool college kids in April.  Aunt Claire (not Grammy, but Claire Davis) set up superhero visit through a local Love Your Melon chapter.  These college kids came down from Buck's County dressed as superheros and visited Blaise and Lucy.  Blaise also dressed as a superhero to welcome them in!  These were really special young people, doing something really special on their own time.  Thank you a ton!

Since Blaise already had his own superhero outfit, he wanted to give one to Mr. Moore as a thank you for the awesome basement!

Other News

1 - 1 new team member signed up, Thanks Bridy!  Think about riding along with us from the Ben Franklin Bridge to AC in June 12, Team Beat it Blaise.

2 - Official Save the Date for out NJ readers especially.  A good friend has set up a great event for us at The Taproom n Haddonfield NJ.  This is a top notch establishment that will be contributing a percentage of the checks to Blaise to help out.  The event June 23, 2016 from 4-9.  If you're in the area please come by, I know Blaise will be making an appearance, and you can probably sign his cast then too!

3 - T-Shirt should be starting soon too.  I am finalizing details as we speak!

May, how the time flies

Good evening everyone.  I am writing for the first time in a long time.  And I coming to live from the friendly confines of the playhouse made famous from Arch and Chef visits about a month ago.  It is really big and spacious.  The kids love it, but it is also a good place to get some work done!  Here it goes...

I am quite embarrassed to say that I am not even sure where we left off, but here is where we are now. Blaise is gearing up for surgery.  The date is set, and has been few a bit now, May 18th.  Blaise will undergo his vascularize fibular transplant surgery.  This surgery is long, 6-8 hours, and conducted in 2 halves.  The first half is the removal of the femur, and eradication of the cancer!  Then the whole operating room is switch out, and the fibula is grafted and the blood vessels reattached.  Really complex, but we have some of the best doctors around working on it!  Here is what we're looking at...

1.) This is Blaise's left leg, his femur.  It's his most recent x-ray.  You can see his hip at the top

2.) That box is the area of his femur that will be removed.

3.) If you look closely, you can see a smaller rod like drawing in the center of his current femur.  It extents a bit further than the area being removed.  That is his transplanted fibula bone.

4.) Along the right side of his bone will be a metal plate.

5.) The squiggly lines are screws that will hold the plate in place.

6.) The incision on the upper leg, will be rather large.  It will look like an eye, because the doctors do not want to disturb the disease.  It will be sealed up with staples.

7.) This surgery will require a cast, obviously!  We were told it will extend just below the knee and wrap across his hips.  Kind of a big deal!  It will be on for 4-6 weeks.

8.) After the cast, Blaise will be in some type of full leg brace and non-weight bearing for a period of 6-9 months.




As a loyal 76ers fan, I fully "Trust the Process," but that does not mean I am mentally prepared for what that looks like.  I am beyond terrified of the immediate 4-6 weeks in a cast.  I am nervous because I do not want Blaise to get discourage, sad or upset at his limited abilities in this next stretch of time.  Just to give you an idea of what it will look like...

Amazing medical care in Arendelle

The team told he will most likely surprise us with how he gets a around.  And he has surprised us every step of the way.  So I guess there is no reason to doubt that he'll do it again this time.  But please keep those prayers coming.

Sunday June 12
One Sunday 6/12 I signed up to ride from the Ben Franklin Bridge to Atlantic City in the American Cancer Society Bridge-to-Beach ride.  I started a team Beat it Blaise, consider joining me on the ride.  Its 66 miles and is not to bad.  Honestly, I have done it a few times, even my dad has done it!  It cost about $200 to ride, $80 to sign up and mandatory $100 fundraising, but it is fully supported and rest stops are plentiful.  I am not asking for extra donations, but feel free to do so.  I am hoping to get a shirt order in so we can ride in style too!

Other Updates!
We took Annie to Anthony's at Paxon Hollow for brunch yesterday for Mother's Day.  It was delicious.  And Blaise and Lucy behaved for about 10 minutes of it!  They much preferred the golf course...

A belated happy Mother's Day to all our readers!

Blaise and Lucy have taken up bowling!

Blaise was also the honorary champion at the Go for the Goal annual Richard's Run a few weeks back.  Go for the Goal is a foundation started by a Camden Catholic family I was able to work with during my years there.  My old principal encouraged me to get in touch with them and they have been great resources for us!  Check them out here!  Blaise may have been the honorary champions but Nonie and Big Bob Davis were the actual losers, coming in last place in the event!

Picture from Go for the Goal Facebook

Also, a big congratulations to Lauren and Ed.  Great time at your wedding!  As Blaise says, "Lauren and Ed, true love!"

I think that is all I got for now.  Blaise and Lucy are looking forward to some special visitors Wednesday, so maybe another blog post coming soon!  Until next time...

Hello My Friend, Hello.

Hi Everyone,


So sorry we have been off the grid. There were multiple contributing factors for the radio silence, nonetheless, we are back.  Since we last spoke, Blaise completed cycle 5, had mid-treatment scans, and got a new play room.

Cycle 5

Once again, Blaise made counts.  He continues to exceed expectations of all with this feat. We were told to expect delays and not get too hung up on them. However, he has not had one yet. I write this on the eve of cycle 6, and it's going to be tight to make platelets, but I am hopeful and confident that he will have a strong showing tomorrow ( I sound like I could run for President this fall).

Anyway, we don't know why he is blasting through this- but we are so glad.  It brings the end that much closer. I like to think that maximizing his time at home as somehow contributed, but of course I am biased. Truly though, being home as much as possible has definitely helped his mental and emotional health. Don't get me wrong, we have definitely seen an increase in shyness and "clingy-ness", but we are giving him a pass with some of that because, ya know, Cancer.

We avoided vehicular puke-fest this cycle but of course scored a fever and a few transfusions on our off week. Off week is a funny word, because they tend to be more eventful then our chemo weeks. But, we did not have an inpatient admission this time, so, win.

Blaise went to PT last week and he did SO WELL. I  was so happy about this, they really feel he is walking into surgery as strong as can be.  Everyone was so impressed with him, especially Andrew and I.

Scans, Man.

So-  we had scans this past Thursday- vomit. Anyone who has talked to me since diagnosis usually will say I have it pretty together. Until we talk about the scans and then I am all OMAGAWDWHATIFTHECHEMODIDNTWORKOHMYGAWDOHMYGAWDWHATDOYOUTHINK?!!?!?!

So, those scans came.  Thankfully, Andrew was not worried about them at all, nor was anyone else in the Division of Oncology.  But I was. I think I had a touch of PTSD related to how out of my control his diagnosis was. My bestie Cathe came with Blaise and I and sat with me. I was physically anxious the entire time Blaise was back there. This was the first time we were truly evaluating all his hard work the last 11 weeks.  Its difficult to look at a kid and know they look good and use that as your gauge. Well, that's not true. When they were my patients, I always trusted that gauge. But this time around, as his Mom I just couldn't fully believe my gut. But, everyone was right. His scans were great- his leg looks the same if not better (more on that) and there are no other nodules elsewhere.

The leg looks the same if not better- kind of a weird thing right? Well, if you remember his disease was caught so early that there was no soft tissue mass extending from the tumor. If there had been, you would expect that to shrink from chemotherapy. However, Blaise's MRI simply showed that that part of his leg is not normal.  The I&D that he had before we knew this was cancer also contributed to the bone not being normal, so all that matters is that that part has GOT TO GO. 

Next Steps

So, now that scans are out of the way, the orthopedic oncology team will confirm their surgical approach and we will have a meeting with PT, ortho, and onco to discuss Blaise's surgery and his road to recovery.  Now that I know he has responded to treatment, I actually feel excited to get this next step out of the way.  However, I do feel pangs of sadness when I look at how functional this sick leg is. He is running jumping and playing, and in a few weeks, we will take that away from him. However, I hold on to our Orthopedic Oncologist's words- "What's six hard months when you have 85 years of a great leg?"  So, I try to just stay excited as this next step brings us one step closer to the end.

So, tomorrow we start cycle 6- hopefully. Surgery is supposed to be post count recovery of cycle 6- but right now surgery is scheduled for May 18th- that's because most of these kids get delayed by now- so Blaise is way ahead of schedule. Because of this, we will probably need to either move surgery up or give another cycle of chemo before surgery if it cannot be moved up. The rationale for this instead of letting Blaise have about a month off is to keep his treatment as compressed as possible, as the research has showed that Ewing's Sarcoma patients who receive chemotherapy on a compressed timeline have the best outcomes.

Thanks to those of you who have been praying, it means so much to us.

Playroom Reveal

So, many of you have probably seen the video of Blaise's Playroom Reveal.  Basically, Wednesday night, the night before Blaise's scans, we received the most generous gift we could ever ask for. Blaise and Lucy got the most beautiful and extraordinary playroom. And Tim Moore, the man who went above and beyond to exceed our expectations, also gave Blaise a playhouse in his playroom. AND he stuffed Daniel Ochefu and Ryan Arcidiacono in the playhouse.  FOR.REAL. We were SO surprised. The guys were so kind, genuine and sweet with Blaise.  We will never EVER forget that night. Andrew and I are so proud to be part of the Villanova Family.  We want to once again thank Tim Moore, Ree Dunphy, Ashley Howard, Ryan, Daniel and the entire Villanova Basketball team.  This morning (Sunday) when I asked Blaise who he played with yesterday (expecting to hear Grandmom) he said "The Cats! Ryan and Daniel!"  Clearly, you all made such an impact on our sweet boy- thank you so much!

See you next time, and enjoy some pics from the Phillies Game today!
-Annie