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.