Thursday, June 16, 2016

Officially, Official!

And the test are in...
Well earlier this week we got the news from the oncologists that Blaise's margins were officially, officially negative.  Great stuff, but what does that mean?  So when the femur was taken out of Blaise's leg, the edges were tested quickly to see if there was any cancerous cells.  There were not, but that was expected.  So we had to wait for the official results to come in.  These tests involve the bone calcifying over, and then being sliced apart and examined.  Well if you can believe it, Blaise's tests were not that easy.  And that is a really cool thing!  The bone needs to be dead in order to calcify, and Blaise's bone was not dead, except the tiny part where the tumor was found.  Annie was calling it a tumor nest, sounds legit, but I am not sure it is a technical term!  This affirms what the original doctor said way back in February, nothing looked grossly abnormal!  Remember, he said when initially went in, and we thought it was a weird infection, that everything looked normal and he really needed to search for disease to take out.  Well Annie caught this tumor so early, it did not have time to eat into his bones, or soft tissue or anything else really!  Great job!


Weekend Update!
So this was quite the weekend.  As one of our friends at the hospital said, "You guys are always so busy."  I am not sure we are busy, or we're just trying not to sit around and think about cancer constantly.  We're just trying to maintain our sense of normalcy, which involves doing super fun things all the time.  Why would we waste our time doing not fun things if we could always do super fun things? 

As I said in my last post, it was Annie's 10 year reunion this past week, Go Cats!  I was the youngest alum there, class of 2013!  It was pretty funny to hear people whisper to each other as we rolled Blaise by them, "There is the little boy from Facebook" or "look at his Villanova cast."  Blaise and Lucy unimpressed with VU, or just really hot and tired.  Dad was unimpressed because they ran out of Miller Lite!


After the reunion, we tried to cool off and regroup.  And boy did we ever.  The Westgate Hills Civic Association had a showing of the Wizard of Oz in the park.  It was awesome.  Dorthy on the big screen, in the park and hanging out.  And our kids were really the only kids there that knew what the movie was about.  Blaise knew all the words, songs and dialogue.  They set up a snack stand, with popcorn so Lucy loved it.  And they had a 50/50, we did not stay until the drawing so not sure if we won!  One of Blaise's friends from school was there too and was excited to see him!



 

But the busiest day of the weekend was Sunday.  I know everyone is super excited to see how the bike ride to AC went.  Well it went, and we crushed it!  We lost a team at the start, but met up with her later on.  We were so late to the bridge that it opened back up for traffic so we had to use the walkway then had to get a police escort across the Admiral Wilson Blvd.  But we raced our way through South Jersey (stopping every 12 miles or so) straight to the Atlantic City!  Next year's ride is June 11th, so start training!
1st Rest Stop
At the end, Boardwalk Hall
Sunday was also a Ewing Sarcoma walk organized by Mark Herzlich.  Great turnout from the blog readers.  Honestly, I was really impressed people read these posts and don't just look at the pictures!  Best outcome of the day, is that Blaise, while being heavily recruited by Mark, is still a loyal Eagles fan!  Blaise's orthopedic surgeon was there too, so they had some non-business interactions.  Annie was very impressed with everything even though she forgot to pick up the t-shirts she ordered!



Odds and Ends
People always ask how Lucy is fairing throughout this process.  She is doing great because she loves being with her brother.  She wakes up every morning asking to see Blaise, then asks to play in the basement.  She is also becoming quite the handful.  She has her personality, and knows what she wants.  And when she does not get it, she lets you know it!





Also we have started to notice Blaise trying to move around a bit more.  He is starting to climb off the couch or chair and roll over the floor.  Its pretty funny to watch.  It is also pretty funny to leave a room, then come back in a couple minutes and find him on the floor reaching for toys!


Chemo started back this week, and Blaise is moving through it fine.  But tragedy struck yesterday on the way to chemo.  A mild fender bender...



It was just Annie and Blaise in the car and they are fine.  A few scraps and bruises but otherwise OK.  I think Blaise was more upset that his PB&J flew out of his hands and he couldn't finish it!


Remember, the T-shirts are in and about half have gone out.  Get your payments in and we'll get your T-shirts out!

Also next Thursday, Dine and Donate at The Taproom in Haddonfield.  The party is raging from 4-9 pm!  It has turned into the premier social event on the South Jersey calendar!  If you're in the area come by and have fun with us and our friends!



One Final Thought!

picture from CCHS Facebook page
A former colleague of mine, Jack Phipps is retiring after 52 years at Camden Catholic High School.  We celebrated Jack this afternoon at Pinsetters, and it was great time seeing my friends from CCHS.  There is no doubt that he was positive influence on each of us as a teacher, counselor, colleague or fiend.  Jack is always asking about Blaise and loved seeing him at after school happy hours.  He told me today he can't wait to go down to Cape May in September, and I know he'll enjoy it!  Good luck Jack, and thanks for everything.

Thursday, June 9, 2016

Post Surgery Update

Great News!



Blaise went to the doctor on Wednesday and had some good news.  Everything is on schedule.  He had some x-rays taken, and his cast cut open to check on the incision.  Everything looked good.  And Blaise was a trooper the whole time the saw was buzzing right by his leg.  And this cast is THICK!  He got a bit more uncomfortable when the doctor started to remove the inner padding of the cast to expose his leg.  At one point, our foreign doctor, said "You're talking crazy dude. I talk crazy too but I cannot understand you."  Needless to say it was quite comical.  But seriously, everything was good.  The cast will stay on until July 7th when we follow up.  That is the full 6 weeks.  Honestly, it is probably easier for us because he is getting very comfortable and trying his hardest to get around now.  Annie asked about the beach, as summer is almost fully upon us.  And we were advised to not take him there only because the sand would cause him discomfort if it got in the cast.  We also need to be careful with his sun exposure while on the chemo/bactrim.  All in all not the worst news, and maybe some of you will get to catch Blaise in Sea Isle during the 2nd half of the summer!

But I know you're all here to see his x-rays, and of course I got them!  I am still working on the actually pictures from the surgery, I haven't built up the nerve to ask the doctor yet!  Let me know detail what you're looking at below...

Upper leg - The highlighted part is the steal plate protecting his leg, basically holding it together.  You see the screws into the bone holding it in place.  In the picture on the right you can see a faint piece of bone next to the plate, about half the size of the femur - that is his implanted fibula bone.  Eventually that will grow to be the same size as his femur!


Lower leg - That is an almost completely removed fibula!  10 centimeters were taken out in order to reconstruct the femur.  You can also see a screw in the ankle which the doctor put in to stabilize the ankle.  Anytime you take more than 7 centimeters of fibula, you put in screw in the ankle, duh!  Also, he was able to graft a piece of the fibula to the ankle to help fuse the bones together.  All this should leave Blaise perfectly functioning as a teenager and adult.  Totally typical leg function!  So there is still hope for the big time football scholarship, take note Jim Harbaugh.


Obviously some really cool things, and really amazing things!  I am speaking about this so casually now because it is going well.  But think about how crazy this surgery was, 9 hours or so, 2 teams of doctors and nurses.  Its just incredible and seems so second nature.  We thanked our doctors immensely when it was over, and they said it's really nothing and there are plenty of other people that do what they do.  But in all honesty there is not, these were the best doctors with the best teams in the best place for this to happen.  Blaise is lucky, and I don't think he'll ever know how lucky he is because he will always be just a normal kid thanks to these doctors!

Rundown
As I write these posts I imagine myself as a host on a show like PTI and have witty banter back and forth with my co-host.  Except I am both hosts, and that's weird.  I probably should not have written that.  But onward and upward.

Like I said, Blaise is more mobile and getting to do things he likes.  The first couple days he was kind blah, or "Hope To" as Annie says.  He was a kid version of Eeyore from Winnie the Pooh.  Totally understandable, but that is how he was.

 

But he has really perked up.  He is scooting around the floor, and being as active as he can.  Annie has had him and Lucy outside almost every day and he is doing kid things.  He is starting to get the concept of games, like Matching and Old Maid.  Lucy is just being her normal disastrous - self!  





You also might have seen Blaise has gone viral again.  Well not viral but he is garnering quite the attention to thanks to a Villanova fan blog, Nova Nationer.  Mr. Moore came over and gave Blaise a sweet cast design!  If you want to sign his cast stop on by, its pretty bare with just 3 signatures!


More good news, the shirts are in so get your money to us if you haven't yet.  Once we get your cash, we'll give you a shirt!


A couple things going on this weekend...  
Annie is having her 10 year college reunion, Go Cats.  She's super old, I am only VU class of 2013.

Huge party on Saturday here in Westgate.  The civic association is playing a movie in the park,  And to our delight it is the movie de jour in the Davis house - The Wizard of Oz, or the Wizard of Dorothy if you ask Lucy. Feel free to join us!

Big shout out to the Alfano boys, battling for a VA High School Lax championship!  Go James River!  These guys put Blaise's initials on their helmets in the beginning of the year.  Obviously they played up to Blaise's standards if they made it this far!  Great job and good luck.


  
The ACS Bike Ride to AC is Sunday!  A select few brave souls are riding from the Ben Franklin Bridge to AC, over/under on how many make it the whole way is 1.5.  We'll see!

Also on Sunday, Blaise, Lucy and Annie will be going to Steps for a Cure.  Its a sarcoma walk sponsored by Mark Herzlich of the NY Giants.  I am boycotting because he plays for the Giants (I'm actually riding my bike).  Actually, he's probably a really cool dude, he is Jesuit educated and played lax in high school (only the best of us can say that).  Mark is a survivor of the same cancer as Blaise.  So like I said earlier, Blaise is still in line for that big football scholarship.  If you cannot ride to the shore, think about heading to Wilson Farm Park in Wayne and join the walk.

And finally, a big time congrats to Uncle Goo and Margaret on the birth of their son.  Not only did they have a kid but they named him after me, so I am super pumped for that!  Here is Andrew Miller Jr. meeting his buddy Blaise and I am not sure who is more confused about the encounter!


That's all for now, I am beat after a long day at Hershey Park with 8th grade!







Monday, May 30, 2016

Follow the Yellow Brick Road

Hi Everyone, it's Annie.

We are finished surgery- what a huge accomplishment for Blaise. Thanks to everyone for following along with Andrew's live tweets on Friday- and apologies if you are still waiting for a text back from us- it has been a whirlwind!




Blaise did an amazing job during his surgery- both surgeons were extremely pleased with how he tolerated the procedure, and what they were able to achieve.  I am truly in awe at the talent of these two men and their teams. Life in a spica cast is actually pretty good-  Blaise, as you know, is a tiny guy and so the cast, while cumbersome, is not the monstrosity I was prepared for. The good news so far is that we have learned Blaise can fit in his own car seat, and that he has been able to do things like sit up, eat, sleep and play comfortably in the cast.  This is a major victory for our family as Andrew and I have tried to normalize this entire cancer experience as much as possible- so being able to still be a kid is a huge win.  An unexpected win for Andrew and I is that we will likely be totally "jacked" by the end of this month- I woke up this morning feeling like I was doing deadlifts for 24 hours straight. This summer body will be earned from a spica cast!  All kidding aside, we both are able to easily scoop Blaise up and transfer him from bed to chair whenever he wants.  This makes us so incredibly happy.



Overall, Blaise is doing incredible, his pain is very well controlled and we are already on the regimen we can follow at home. We have had some unexpected bumps in the road post op, one of which appears to be coxsackie- he has several mouth sores that are not consistent with mucositis- the good news is they appear and have proven through testing to be nothing serious. The bad news is they just make him feel a little run down and am I the only one that thinks its a little ridiculous that this sweet boy has to endure normal toddler rights of passage in the sick department WHILST recovering from a limb salvage procedure? Hoping we are on the mend...  Our orthopedic oncologist tonight said that we can start planning to go home- possibly tomorrow night, but likely Wednesday. This, will be a big win for us.

This admission has made me really cherish the experience we have had thus far. How lucky we are to be home as much as we are. It is so stressful to shuffle Lucy back and forth and for either Andrew or I to say goodbye to Blaise or Lucy each night. We are so grateful for all the care we have received thus far- however, nothing beats being home. I cannot wait to have a week or so to start this next phase of the journey reunited as our family of four. We are more than half way there- Blaise and Lucy are on a major Wizard of Oz kick, and they love all the music, especially Follow the Yellow Brick Road- so, I think right now, we are on the proverbial yellow brick road- almost to Oz (clinic maybe? that's weird- who's the wizard? Our oncologist?  Okay, maybe this won't work-) , and finally home to normalcy once more. 

That being said, a really cool part of being a CHOP parent is discovering things you didn't experience as an employee- Last night, Blaise and I sat in the Brodsky Healing Garden, and we had Andrew and Lucy join us today. The respite and peace that it gave me to bring Blaise outside on a warm summer evening was indescribable. I give it four stars!




Look for another post soon once we get home- I am off to enjoy the night with Lucy, and try not to miss our other halves too much. Thanks for all the support. Whether is was in person or in spirit or via a snapchat filter,  we have felt all of it and can never thank you enough. Big shout out to the trio of Catherine, Shanna and Pat for raising Lucy in this time of need- she had a blast and I think wishes I was as fun as each of you!





** Don't forget to order your T-Shirt by tomorrow at 10 pm- see here!  Until next time!

Saturday, May 28, 2016

Surgery Updates (Copy/Paste of Twitter)

  1. Here he is! Sleeping, in no pain right now.
  2. Wound being closed, all that is left is to cast and wake him up!
  3. #7 - both docs working together now!
  4. #6 - about 2 hours left. Cast color = blue!
  5. Just talked with the Dr. Blaise is doing great, currently removing the fibula and then reconnecting everything
  6. Update 4 - Nothing new. We thought it might be halfway, but not. Blaise is perfect though, moving along. &steady
  7. Update #3: great vital signs, no specifics, but Blaise was flirting with the nurse taking him into the OR
  8. Special buttons being worn today!
  9. Update #2: nothing new to report. Added a couple of IVs (planned), ndb.
  10. 1st update: Blaise is asleep, and surgery started. No issues, with anything! D,B 2/19 is Blaise.
  11. The doctor asked to bring Kristoff into the OR to copy his cast