My Former Patient!

The End has Arrived!

Yes, you read that correct!  But let me set the stage.  We saw Blaise's doctor at the CHOP Parkway Run last Sunday.  She was more than gracious to come over to us and say hello.  I made the comment, "It's so nice of you to come over and say 'Hi' to your patient!"  She immediately stopped me and said, "Andrew, my former patient!"  And that was it, at that moment, I felt like we were in the clear.  It was very surreal hearing that comment at an event with 10,000 of my closest friends all celebrating, honoring and fighting for kids and families affected by cancer.  And here we are 8 months later; 3 surgeries, 14 cycles of chemo, 2 bouts with pneumonia, dozens of ER visits and, for me at least, the scariest stretch of time since Annie told me I was going to be a dad 5 years ago!

As we close down this on chapter of Blaise's fight I figured I would share with you what we, mostly Annie and Blaise, saw every week for those 8 months.  The beautiful Buerger Center for Advanced Pediatric Care Oncology Clinic at the Children's Hospital of Philadelphia.  Talk about a mouth full!

After parking, this is the entrance from the garage!

The Main Lobby, where we had to check in and get a new ID card every day

Checking in at the clinic

Thanks to Alex's Lemonade Stand, and the Scott Family, this is where Blaise got his chemo.

Typically, in room 45 of the Day Hospital

Now this place was amazing.  And Blaise liked it so much, he blew through treatment faster than any other kids they have seen.  He'll be back.  For one, the Orthopedic surgeon is on the 4th floor of the building, so he has many follow up appoints there.  So is the PT clinic, which is the next major step in his recovery!  But Blaise will continue to be followed by Oncology.  I think Annie outlined it in her last post, but it's every 3 months for now.  Then every 6 months, and then moves to yearly after 5 years.

Last Friday Blaise had his port removed, which is another cause for celebration.  Next up, the g-tube, possibly next week.  They told us it could be a simple office visit for that though, so we'll see.  We kept that in because he got a mild case of that dreaded GI infection he's had since May.  The antibiotic is super gross, so we kept the tube in to make taking the medicine tolerable for him.

Annie asked Blaise what he wanted as a present for finishing chemo, and he picked out an electric Spiderman toothbrush.  Yup, you read that correct.  He's really making Uncle Joe Casey proud!  Now every night we watch as the old man Blaise, sets up his night time routine and follows the exact same steps before going to bed.

And just like that, chemo ended and Blaise became the same kid he was back in February.  I've been telling everyone that would listen, it's like a switch went off and he knew it was over and he just went back to normal.  He is testing the limits of walking, but don't tell his surgeon!  He is happy and eating 5 meals a day!  He is also sleeping great again and smiling more than ever.  It has been awesome to watch. He also has a super strong right leg, totally jacked up quad muscle! 

As we continue the celebration, I really need to thank The Colonel, Joe Kerins!  I introduced Joe a few posts back, he's been my good buddy for a long time now.  But the WiffleFall Classic was awesome.  A great turnout, and great competition, at least from most teams!  But thanks again Joe!

Blaise also got to lead the Marple Tigers out onto the field before their homecoming game.  They smoked Conestoga, and I'd like to think it was mainly because of Blaise.  That was a really cool experience!

 And through all of this, Lucy had the time to start dance class, and continue to keep us on our toes.

And thanks to the DeBow family, we ended chemo with Boss and the legendary E Street Band.  And you might remember from a earlier post, I saw the show back in February too.  I've seen this show many times, and every time I go I wait for one song.  I hope to hear E Street Shuffle.  I never have, until this night.  And as my old friend told me many years ago, there is something magical about a Springsteen show, and when that song came on halfway through Bruce's longest show in North American history, I felt the magic.  And it could not have been a better way to celebrate Blaise beating this terrible disease!

  

The Benefit

So it is officially happening.  Some of of you have bought tickets, many have expressed interest, and it is very much appreciated!  You might have noticed a PayPal button on the right side of the blog, you can pay for a ticket, or more, there.  We are accepting donations for baskets, and already have a few good ones lined up!  So please spread the word, invite friends, buy tickets and come dance and spend some time with Blaise and Lucy!  

We would really like to get a best estimate head count beforehand, so please let us know by buying tickets or telling us.  There apparently is a Facebook page too, but I am not on Facebook so I cannot help you there!   If you have any questions please ask, beatitblaise@gmail.com.  We hope to see you there on October 22 at St. Kevin's!

The Space Between

Apologies for the radio silence.

It's been a minute.

Here we are, and it's Annie.  As most of you know, Blaise finished chemo last week.  What an incredible achievement. Loved ones celebrated, congratulated us. I have to admit, I held my breath until Tuesday at about 1 pm.  You see, chemo was finished, but we needed those scans to deposit.  I say deposit- you wonder why...

Because now, we need to live between scans.  Our beloved attending told me last week when I was having a moment of "how do I DO this?" that each clear scan is money in the bank.  And we just had our first one.  However, this scan trailed 5 days behind last chemo. So as people celebrated "last chemo"  I, ever the oncology nurse, was superstitious to agree with that sentiment.

But it seems it was our last chemo...  And, Blaise, Lucy, Andrew and myself could not be more relieved.  Tidal wave of relief as some friends have described it to me.  I agree. However, there is a harsh reality that we need to look for this disease every 3 months for the next year. After that, we space out to every 6 months for 4 years.  Then--- every. year. FOR. EV. ER.

As an oncology nurse, I always appreciated this vigilance. I looked at a kid like Blaise, knew that he would be okay, and was "happy" for those parents that we would watch him so closely.  As his Mother, I am finding that very hard.  The moment I begin to exhale and put this nightmare behind my sweet boy, we need to gear up for more scans.  Our team hears my anxiety, and they don't dispute it.  They know this fear that is created is a real phenomenon.  Unfortunately it is necessary right now.

Here is the fantastic news though-  Blaise is defying the odds-  his leg is healing rapidly, and I smugly enjoy watching every world-renown clinician scratch their heads when they encounter his range of motion for the first time.  And we are defying these odds in a very non-traditional way.  We do physical therapy ( "PT") on the beach, or in Target, or on our patio with his baby sister. His port comes out next week, so does his G Tube. Soon, this will all be a blur to him.

That blur is what I hope for most. My memories of my 3-4-5 "years" are just that. And I know that getting his port accessed and getting nightly feeds will be part of that blur, I hope that it is merely blurry.

So, we are doing so well, learning to walk again, and learning to live in the space between the scans.  Andrew lives in that space much better than I.  He trusts and he knows.  Sometimes, my head runs away to places it should never go. However, Blaise's strength and improvement every day tells me that Andrew's trust is right. Andrew will be handling most of Blaise's PT needs as I plan to go back to work, and I am so excited for Blaise to get whipped into shape by the second coming of Coach Davis (maybe the third if we include the NEPA region).

THANK YOU to everyone.  For everything.  We could not have cared for Blaise without you.  We are having a benefit October 22 at St. Kevin's in Springfield to help us finish strong.  Our wedding band, Marquee, is playing, it is sure to be a good time.  Hope to see you there- please contact beatitblaise@gmail.com for ticket or basket info- we are encouraging advance ticket sales.

Yep, We're Still Here!

The kid's (or teachers) at St. Matt's keep doing crafts for Blaise while he's gone

I started to watch the Jim Gaffigan Show.  I am behind, so no spoilers!  But in one episode, he gets in trouble for sending an inappropriate tweet.  There is this great scene where his wife is asking him what happened, and she stops him and says, "You know I am your tweet police, and grammar police too!"  Or something along those lines that I cannot exactly remember.  But that rings true on this blog, Annie is most certainly the grammar/spell checker/pc police person when it comes to writing.  And honestly, she has not had the time to keep me in line on the Internet!  So good luck to me as I write this first post ever solo, and good luck to you as you try to read it!

Quick Catch Up
The cast is gone!

And as soon as it came off, Blaise asked to have it put back on...

Kristoff got his cast off too...

So now we have a 4 year old that is no longer burdened by a cast, but he is supposed to stay immobile.  That might be the hardest thing to do.  Trying to keep Blaise from not walking/climbing/rolling/kneeling (really anything that puts pressure up his bone) is next to impossible.  But I think he has started to figure out he cannot use his left foot yet.  He is sick of us telling him that for sure!  He is scooting across the floor, faster than you could imagine, and surprisingly willing to use his walker too.  But he has fallen a few times with that.  He is absolutely more independent than you would have thought, its way better than anything I imagined back in February.  It's really cool to watch!  He can go to the bathroom, get his own food, go up and down stairs, really anything.  And I would say just about the whole time he is very cautious of his left leg!

Now what I describes is probably not what the doctors want to hear, but its reality so we live with it.  We do our best to protect him, and help when necessary.  Even this morning Lucy offered to pick him up and bring to the basement to play.

We were given this brace for him to use, and his orthopedic surgeon told us, "Its Velcro, he is going to learn to take it off.  The brace is about educating him to be cautious and not use his leg."  Well, Blaise learns quickly,  Because when we got home from the hospital that day we put the brace on for bed...

Not 10 minutes later I heard the straps come off, and I went in to check on him.  He looked up at me, with the biggest smile on and said, "I'm busting out of here!"  And the brace was off...

So we try, and we use it as much as possible, but he is smart and he does not like it.  So it comes off.  We find it on the floor in his room at night or during his nap.  We tried to use the much smaller boot only brace, but that comes off just as easily.  We keep trying, and he keeps telling us what he wants.

The ortho follow up was real good.  We have x-rays but they look identical to the ones I showed right after surgery.  So no need to share them.  Some really good early signs of healing though, which I was not expecting, but a huge plus.  I was curious about how his leg will grow, and I have expressed that before.  So basically, your bones grow from the ends, that's where your growth plates are located.  The top of your femur is responsible for about 70% of growth and the bottom for the other 30%.  So while Blaise's whole femur has a steel plate on it now, that will become significantly smaller as he grows.  The plate does not shrink, the bone grows!

Another interesting note, and one I was not fully aware of is his scare.  It looks great and there are no staples, so just a straight solid line.  But the size is amazing.  I said to the doctor, "It's his whole leg!" He responded with, "Come on, there are 3 inched by his knee with nothing."  Its huge, but great and no maintenance, except for his mother's crazy magic lotion and tape she puts on it.

Where have we been?

 The long and short of it is, we've been at the beach!

We went to the rides, the zoo and the beach.  Just chilling out max and relaxing all cool!  Pretty funny story about the zoo.  A better word is ironic!  We're at the zoo and there is this big LIVESTRONG display outside the Tiger Cage.  Turns out the cat at the Cape May Zoo has some form of a sarcoma and is undergoing treatment for it at the same time as Blaise!  

We did not see Rocky, Annie figured his counts were low so the Zoo Keepers had him hooked up to fluids watching Daniel Tiger or Sid the Science Kid.

We explored a bit more around the zoo and saw some antelopes.  And another huge display about some medical anomaly going on at the Cape May Zoo.  Turns out one of the antelopes had his femur fixed with a steel plate and his leg looks just like Blaises'.

We had a few cool sightings down the shore too.  I think you saw we had dinner with Mickey and Minnie.  We also met Santa, he came to dinner on a boat!  But the best sighting was non-other than Fr. Kevin Quinn, S.J. president of our beloved University of Scranton.

The University put on a great event in Stone Harbor so Annie, Claire and I along with Annie's colleague went over to check it out.  Fr. Quinn was a great host.  The real fun was texting back to our brother (who works directly for Fr. Quinn) what we were talking about.  I am sure he is going to be in trouble when Father returns to campus!  Good luck to him.

Other Big News
Two huge events in September to let everyone know about.

First is the 4th Annual WiffleFall Classic.  This event was started by none other than Joe "The Colonel" Kerins.  I have been to 2 of the 3 so far.  I missed the first event because I was at the hospital all night with Blaise as he was battling a nasty episode of croup.  I would take that fight any day now!  But we play wiffleball and have a blast.  Last year, the weather was not great but the event was amazing none the less.  To top it all off, Joe has changed his charity of choice this year.  Joe is a financial planner, and does good work.  He has all my money!  He works with many families that have children with Down Syndrome, so this tournament has typically benefited the T 21 Club of the Delaware Valley.   But this year, Joe is helping us out with the tournament and all the proceeds will go to Blaise!  So please come out, get a team together and come have fun.  The park where it is held is awesome, tons of space and playground equipment!  It really is a blast.

The other event is the very next weekend.  This is a culmination of the training and hard work Annie and I have been putting into our fitness.  We have started a team for the CHOP Parkway Run.  It's 5K down at the Art Museum.  Our team is Beat It Blaise, and so far its just me and our friend Cindy.  Judging by her picture she appears to be a serious runner.  So I am encouraging all bad runners, and walkers to come out so I can beat somebody in this race!  An added bonus is that the Eagles play at 4:00 that afternoon so I can get my post run nap in and still watch the game!

Parting Shots

We're heading into the hospital tomorrow for what is most likely going to end up as a blood transfusion.  No big deal, but I say that because he only has 3 cycles left.  He has done so very well through all this.  We can see the end, but its not any easier.  He has his bad days, but they seem to not be as bad anymore.  He still gets sick, but even he is better with it now.  He has been, and continues to be, inspiring.  So keep praying, keep thinking about him and keep asking us about him.  There is nothing better than talking about my kids!

I also would be remiss if I did not wish congratulation to our friends.  

First off, Tara got married to her Matt the day after Blaise's cast came off.  It was a great night, and a better party!

 This past weekend, Flannery married Fino.  It was really cool to see some guys I have not seen in a long time and catch up.  Another good night.  Thank God for Uber!

Also, we have not forgotten about it, but planning a Beef & Beer is a lot.  We're trying to figure it out, and celebrate Blaise one night later this fall!  Any help would be greatly appreciated, just email us!  

Also, the t-shirts are awesome, but if you still have not gotten yours please do!  Let's get them out of my house!  Just send me your address and I'll deliver it ASAP.  And we're looking into another order, so if you did not get one and still want one, let us know so we can get a count for it!

That's all I got.  Thanks for reading and hopefully it was not too bad without Annie's proofreading!

One more thing, Lucy's birthday is Friday!  She'll be 2!  So say a special prayer for her too!  She needs prayers, she thinks Blaise's needle disposal bin is a pillow!