And so we meet again!

Many apologies for the lack of post over the past week and half.  I honestly lost track of the time.  I'll do my best to fill you in, and I am sure I'll forget something.  But in all honesty, there is nothing really new.  Its more of the same for us, which is good!  Blaise is moving through and being a typical 4 year old most days!  Its been much  better than expected.

Let's pick the story up two weeks ago, on the Ides of March!  This was supposed to be an off week!

On March 15th, Blaise and Annie had to go into the hospital because Lucy slammed his head in the door.  I was at work, and I am not sure this was accidental, but Annie swears it was.  Lucy, to her credit, as stuck by her story that she was just playing and Blaise's head got in the way.  The hospital trip was because Blaise had a low platelet count at the time.  Something that happens 7-10 days after the first day of treatment.  Tuesday 3/15 was 10 days out, perfect timing Lucy!

Wednesday March 16th brought another trip to the hospital.  And a Happy Birthday to Nonie!  Remember this was the off week!  This trip was a bit of a buzz kill, and really brought this situation back to reality.  Blaise was killing it all day, playing and enjoying the awesome weather.  But after a walk with Annie, he got a fever of 101.3, which is a automatic trip downtown, and a 1 night stay at CHOP.  We were told the fever was probably caused by an infection in his Button.  All in all he was pumped full of antibiotics, sent home and responded just fine!

Thursday, was another trip back to the hospital.  This one planned, the doctors wanted to follow up and check his level, especially in light of everything that happened that week.  Annie and I were pretty certain that he would need a blood transfusion.  That being said, Annie brought Blaise in, and everything went great.  He was set for chemo the following week!

Friday brought the best of times.  Blaise cousin, and buddy Jack, came down from Scranton.  Jack's sisters came too, and Lucy and Blaise really enjoy all hanging out with them.  And Blaise was feeling good which made a real fun visit.  They even got meet Gaston in person, thanks to the MBAP High School production!

During the visit, my mom noticed Lucy was getting quite the cough.  We knew it to, but felt nothing of it.  I mean her brother cancer, she can shake it off!  But Annie took her to see the good doctor Kenis, and boom - a reactive airway was diagnosed.  Now her and Blaise can share!

They had so much fun with their cousin, Lucy did not make it to her bed Sunday night...

... she was also really confused about anatomy.

And my house still has not recovered!

Now this past week - 4th cycle treatment all 5 days and Dad's Spring Break!

Monday we both went to the hospital with Blaise.  I wanted to see how he was doing at the clinic and we also had a meeting with the micro-surgeon who will be reconnecting his blood vessels during the surgery in May.  He was nice man, and very personable.  He is a very big deal, like president of the world microsurgery organization or something, but took time to talk with Blaise and ask about our family.  It was not the face time I was expecting with a man of his professional stature.

Blaise's team at CHOP also had some really cool things to say.  They were very pleasantly surprised that he has not had a set back yet.  They have prepped us for these, and we fully expect for them to come, but they haven't come yet and we're cruising through treatment for now!

The further we get into this, the more I feel like we got very lucky with this diagnosis.  Now, obviously we are not that lucky, Blaise has cancer, but everything else has been the best possible news.  Annie and our doctor pushed hard to get answers at time when doctors did not want to give them to us, and Blaise is better off because of that.  Just think, if we had gone with the first diagnosis, an infection with IV antibiotics, we just be finishing that up now.  Now we're 4 cycles deep into a 14 cycle treatment, moving through at a rapid pace.

The rest of week was pretty standard.  But since it was Spring Break, Lucy and I got to hang out a bit more.  Annie and Blaise went down to CHOP while Lucy and I sat in our PJs and ate ice cream!  Not exactly, but not that far off.

 I really enjoyed the week off from work, and it was fun for everyone.  Well, maybe not Lucy she was stuck with me doing her hair and picking out her outfits.  One day I'll get the hang of that!

Friday was great too!  I took Blasie to CHOP.  We made plans to go to the shore for the weekend, and we didn't want two cars at CHOP or to bring Lucy down for the whole time.  The original plan was for Annie and Blaise to head down, then Lucy and I to join them later.  Well, Annie was sleeping so I said I would take Blaise in and her and Lucy could come later.  Blaise and I rode SEPTA, the 104 bus to the El then a walk down 34th street.

We met a nice guy named Don on the bus who asked all about Blaise and his treatment.  It was super awkward when he asked where we were going.  I mean, he is the bald skinny kid, and I just so happened to have CHOP shirt on.  But I told him and he said Blaise would be in his prayers.  The people you meet on SEPTA are awesome!  Just ask Bob Dell about the ride home from the Phillies parade!

Blaise was really excited when he heard we were going to ride a train.  He had the transfer, and kept calling it his ticket.  He would not let it go. He also starred out the window saying "Look at all these people!"  And he would repeat the announcements on the train, "Next stop 46th street."

We made it in to CHOP, with a quick stop at Federal Donuts, and started chemo.  This round is not as potent as the odd numbered cycles, but it did make him very sleepy.  So he basically, got hooked up at the hospital, watch an episode of Curious George or something and then passed out everyday

.Then we made it to the shore, and he was excited.  There is something special about driving over that JFK bridge into Sea Isle, but hearing Blaise's excitement this time was something I'll never forget.  The weather was not great, it certainly was not Florida, but we had fun.  We went for a walk, cheered on our Cats and had dinner at that Yacht Club.

The Easter Bunny even showed up!

It was a good two weeks, sorry for the delay in the posts.  Thanks for the prayers, the cards and all the well wishes!  We certainly appreciate it.  And Happy Easter to everyone!

PS - news on the American Cancer Society bike ride is coming soon!

And another weekend down...

It is safe to say Blaise was rocked by Daylight Savings Time.  This is one of the few times we can curse Ben Franklin, the hard partying intellectual responsible for our awesome nation.  This was the worst possible time for DST, coming off a fantastic week of summer like temps, where Blaise and Lucy played outside and enjoyed the Park, today was tough.  One day, in college at The University of Scranton, he'll appreciate a rainy day to hang out and play video games or watch TV, but not now.  Blaise was not happy today, he was tired and mad about the poor seeding job done by NCAA selection committee, and oh yea, he did not feel well.

Today he went in for his typical off week lab checks.  We were also a bit concerned about his "Button."  He's always complaining about us accessing it, but it never hurt until this morning.  It was sensitive to touch and a little red around the edges.  Think of an infected earring, or maybe don't, just trust me!  He ran a slight temp, but nothing too alarming.  He just felt kind of crappy.  And honestly, I don't blame him.  His labs were OK, not good/not bad  The thought processes is that he will need some sort of transfusion on Thursday.  But we were told to expect this, and we do, so no big deal right now.

This was the Blaise I expected to see everyday for the next 9 months.  I am honestly so extremely happy that this is truly the first time he has ever felt bad, outside of the first week home after surgery/chemo round 1.  As I was leaving school today, I was telling a co-worker how he's had many more happy days than sad days.  It really is unbelievable that we're a month into this journey and today is the first time he has not felt like himself the whole day.

One thing we have noticed is that he is not sleeping as soundly as he use to.  He is not waking up, nor is he up all night.  We are noticing him whining in his sleep. I think he is having bad dreams about his toys running away, or losing in musical chairs like Charlie Brown.  Who knows?  We don't think he is in pain, because when he is in pain, you know it.  We find him balled up on the floor by his door, and he his inconsolable.  Blaise in pain is something you know.  These moments are not Blaise in pain, but they are not typical Blaise.

No pain here, look at this smile

Just your average happy hipster

Thanks again...

Over the past week we've had some incredible things happen for us.  Again, such an overwhelming feeling.  Last week, a young student from Cardinal Foley School dropped off a check and some gift cards for us.  Our basement is being transformed into a room for Blaise to enjoy after his surgery.  I feel like I am on Extreme Makeover Home Edition!  We've received tons of gifts and support, like Blaise tumblers...

This evening I received an email from the mother of young man coached 3 years ago.  I can't get over the out pouring of love and support.  I am not sure how we got so lucky, but its unbelievable.  Thank you again!  Thank you so much!

Giving Back

As a way of giving back, my brother and I were talking about doing the American Cancer Society ride to the shore this June.  I've done this ride before with my dad, and its not the most challenging ride and the support all the way down is amazing.  The ride is June 12, and it starts at the Ben Franklin Bridge and ends in AC.  Let me know if your interested in riding.  Its $60 to register (I think) and each rider must fundraiser $100, so it would cost $160 to sign up today.  If we get enough interest, we'll start a team and ride for Blaise as a group!  Check it out!

Oh Wait!

I forgot to add a funny story from last week.  While riding into his second day of chemo, Blaise got sick in the car and puked all over his car seat in West Philly.  Annie is really getting this stay at home thing down, and had a spare set of clothes waiting for him.  However, his car seat was a mess, so Blaise rode shotgun down Market Street to CHOP!

Later that night, his car seat still not usable, I placed him in the back seat (a bit safer) and Annie drove home from her parents.  They were following me home, when I lost Annie on Lawrence Road. When she pulled in the driveway I was waiting outside to see what happened and Blaise climbed out of the front seat.  He had gotten out of the seat belt on Lawrence Road, and climbed back into the front seat!  Annie carefully got him home, and he is safely back in his vomit free car seat, so do not call child protective services on us!

Blaise can't wait for the games Thursday!  Hopefully, we'll get another update in before then!  Thanks again!

Cycle 3

Hi Everyone,

We were back in clinic today for cycle 3-  Vincristine, Doxorubicin and Cytoxan.  Blaise tolerated this well and slept through it!  Just like our "even" cycles- we will try to do our "odd" cycles outpatient as well- so far so good.  I will say that this is allegedly the "pukier" chemo- and he does seem not himself tonight. We are holding feeds tonight and just focusing on a good nights sleep with ativan through his GTube every  6 hours. Hoping this will do the trick.  Tomorrow, he will only get doxorubicin and then we can go home!  He may need a bolus depending on how we do tonight.  To be determined...

"Off Week" Recap

 Last week was a great week- he did have 3 low grade temperatures Wednesday so we ended up going in to clinic a day early- but then we were able to stay home till today, he got a one time dose of antibiotics and a blood transfusion and that carried him well through the weekend.

Last Friday Blaise and I visited his school, St. Matt's, for circle time.  This was so fun for all the kids, teachers, and Andrew and I. I will say this was equally hard for me too. I was sad that Blaise is not in his routine, learning letters and singing songs with his classmates. Blaise was also feeling really good that day, yet it was very obvious to me how fatigued he was compared to the other kids. I guess we have gotten used to his newer, more mellow, baseline.  Regardless, it was a lovely morning.

We also went to the Flower Show this weekend, and it was probably my last Flower Show venture with a stroller on a weekend. However, we still had some good family fun!

What's Next

We have started to think about surgery and how post op will shape our future. I have confided in several people over the last week or so that I am starting to see more and more of the old Blaise these days-  He is gaining weight, playing with his sister and friends and interacting with us in a happy way. The downside to this is that I really feel like surgery will bring us way back down to that first day again. Surgery will be intense and painful, and emotionally challenging for Andrew and I. Even though we are nervous (me more than Andrew) we know that this surgical approach (vascularized fibular graft) will be the best opportunity to Blaise to eventually and effectively have Blaise return to his normal life.

Thank You
For reading this exhausted post, it's short and rather boring than the usual- but even the mighty (bloggers) fall sometimes!  I promise to bring more intrigue to the next post.  But seriously, thank you all for your generosity. We continue to be overwhelmed with everyone's kindness. Everything has made a difference in our new life, and we can't tell you enough how much we appreciate each of you.  Until next time enjoy this relaxing view!

Annie