Bye Week #2

So here we are back on the bye.  Watching the Eagles, the bye week stinks because there is no game, and how many times can I listen to the "Is Sam Bradford the QB of the future" questions?  I guess that question is not only limited to the bye week, but I hear an answer is coming soon!  However, I digress...

Typical bye week blues

These bye weeks are certainly much different.  These weeks can be summed up in the hit song from 1983 (a great year if I may say so), Every Breath You Take by The Police.  I watch Blaise's every move, every breath every sound.  I watch because I am so freaking nervous he is going to throw up, or hurt himself.  Every nose sniffle is a sinus infection, every cough is croup.  Every step, his leg might break.  Now, none of that is true, but its how I feel.  Remember that medical bubble I've been searching for?  Well, I still haven't found it.

The bye weeks are tougher than the chemo weeks because there are no daily doctors visits.  These are the days we are on our own.  And when I am left to my own devices, I am not sure that's positive.

So the second cycle is complete, as Annie has outlined in the previous post.  And now we wait.  We wait again for Blaise's counts to drop, as they inevitably will.  We wait and see how he handles everything.  This waiting is not like waiting for another Eagles game.

On Friday, we had some friends over, and one of them said to me, "You guys seem to be holding up really well."  I guess we are, but I am not sure what else we could do.  I said to some guys at work today, we are just function as needed.  We wake up when he wakes up, we sleep when he sleeps.  We clean his sheets, do the laundry, eat and move around as he needs it.  Basically, Blaise speaks, we listen.  Not the way a house should be run I think.

The Weekend!
As I explained a few posts back, weekends don't have the same meaning anymore.  They no longer serve as a break, they are just more days now.  Days we count off until its over.  But this weekend was great.  We had pizza on Friday and friends over Saturday night.  Sunday was great and we were outside playing for the first time since December.

We decreased Blaise's overnight feeds during chemo last week to not over tax his system, and keep off any feelings of nausea.  It worked, he was great and he even had some type of appetite, still not great but better than the 1st round of chemo.  We felt confident doing this because he actually gained weight going into this last round, which is a complete 180 from the first round.

I feel like this whole post is one major jinx on the road to remission.  It has been so great to see Blaise be himself that, if he did not have a bald head, you would not know he has cancer.

Thanks for watching him Catherine!

Thanks to Toy Story 3, Lucy discovered Barbie dolls

Blaise thinks now is a good time to try soccer again

The Park
The best part of growing up in Westgate Hills was the park.  We spent hours there, not just during the baseball season, but all the time.  Its one of the main reasons I wanted to move back here.  I had such a great time growing up at the park that I wanted Blaise and Lucy to have that same experience.  Now the park is a bit out dated, and there certainly are more flashy parks in Haverford Township, but Westgate Hills Park is the best.

On Sunday, I saw the best possible scene ever.  I was watching Lucy climb on a slide (and face plant off it too) when I saw 2 of Blaise's buddies from school come flying in.  I yelled over to Annie to get Blaise's attention and have him say "Hi" to the guys.

This is a fairly typical thing for kids to do, but I did not think Blaise would do it, and I did not think the boys would recognize Blaise.  I dropped Blaise off at school each morning for 2 and a half years, and I know he is not very social.  His routine is pretty standard, he sits in the same seat, eats the same thing, and does what he wants every time - no variation.  And when I pick him up, he was usually heavily involved in his own game.  I think Annie and I would have preferred he play with the other kids more, or talk about school and the kidsat home.  But he did not.  However, when picture time came around, he could name everyone of his classmates, teacher and some of the other kids too.  We had no doubt Blaise enjoyed being at school with the other kids and teachers, but we just never saw why, until Sunday.  First, these boys went right up to Blaise and said hello.  I could see Blaise's smile from across the park.  It was the most amazing smile I ever saw.  Blaise was so excited to see his buddies, and they were excited to see him too.  Blaise was so pumped he started going on all the things he hates, the swings and the dizzy-spinning yellow thing.  It was hilarious.  It was truly awesome to watch and I am so grateful we ran into these guys.

Is This Sinking in?
I am not sure Blaise gets this.  I don't know what he thinks.  We tell him he has cancer.  We tell him we are giving him medicine, but what does that mean to 4 year old who feels pretty good right now?  I can tell you that he is listening to us.  He might not be understanding, but he is certainly hearing us.  Remember the Kristoff doll that Annie modified?  Well we have found him most mornings being Kristoff's doctors.  He listens to his chest/back and gives him medicine.  And he is talking to Kristoff like we talk to him,

"Let's hear a big cough!"  

"I'm going to connect your button now."  

"That's a great job big guy!"

So I cannot tell you what he knows.  I know he knows when he feels bad, and he knows when he feels good.  He does not get that its because he has cancer and all these tubes and medicine will one day make him better.  I am not sure he even knows things are different.  I think he thinks this is normal, and mom, dad and Lucy are still here and we're just being an awesome family in a different way now.  I hope that's all he thinks!

So I do not want to say we have gotten into a routine, because everyday is new.  I think we've hit a new comfort level with handling this.  But i hope that comofrt level continues to increase as we go along.  It is still very much unknown, but we're keeping it together, and working hard to keep things as normal for Blaise and Lucy as possible.  My sister has reopened the meal calendar for people still looking to help out!  It is still kind of surreal to read Blaise's name in the church paper on Sundays, but the prayers have been awesome.  The cards have been great, and very overwhelming.  But we're just taking it day by day, and hopefully the days become a lot less eventful!  Thanks again, thank you so much!

Cycle 2

Hi All, (Annie Here)

We are back from cycle 2-  well, we never left!  We successfully did an entire 5 day cycle outpatient. I apologize for the radio silence, but it was a busy week. We are tired (Blaise is currently still asleep from 4pm nap), but we are happy- and we were together the whole week. Here's the week in review:

Monday
We arrived to clinic, and our counts were checked- Blaise was "a go".  This cycle consists of VP-16 (Etoposide) and Ifosfamide. Both drugs infuse over 1 hour, and you need an IV fluid bolus prior to the start of the chemo- looking at 3 hours of necessary hospital time. Monday, Blaise needed his port access and we waited for labs, so our day was a bit longer than that. Andrew's post covered Monday so I will stop there.

Tuesday
Tuesday we met with our orthopedic oncologist, and we did quite a bit that day.  Blaise had an X-Ray and was officially given the go-ahead to bear full weight on his left leg. We also can officially say "auf Wiedersehen" to the brace Saturday- our 4 week anniversary.  Blaise can essentially move about as a normal boy until surgery.

We also discussed the surgical plan. As we have mentioned before (I think), the challenge with Blaise is that he is so young, and has a lot of growing left to do. We were given three options for Blaise- We could do a cadaver graft, a cement spacer option with need for second surgery, or a vascularized fibular graft. Andrew, myself, and the team were all in agreement that the third option would be best.

What will happen is they will remove the cancerous portion of Blaise's femur (plus a little extra to ensure clear margins) and replace this with a graft from his fibula-  apparently, the fibula is the appendix of the skeletal system- we don't need all of it!  Bonus for Blaise!  A microsurgeon will be involved to connect the blood supply of the remaining femur to the transplanted fibula. Over time, the fibula will become the femur, they will fuse, and grow together, with Blaise's body.  This will be a very intense surgery, and a long and challenging recovery because the goal is to treat this surgery as another cycle- so we need to achieve this and be on the road to recovery within two weeks, and then we start 8 more cycles of chemo. Our surgeon warned us that Blaise will likely not walk functionally for 6 months, but then came the good news- and I quote "What's 6 hard months if you have 85 years of a perfect leg?"  I did correct him that with a last name like Davis, it's more like 90 years more (lookin' up at you- Mom-Mom and Pop- Pop!).

So, after that- we went to clinic, got our chemo, got our fluids, and went home.

Wednesday- Friday
This is where we felt the normalcy of doing chemo outpatient-  we became a well-oiled machine. I said to Andrew I felt like I was Mom taking us to Lawrence Park Swim Club when we were little- I would pack breakfast and lunch for us (IV fluids in the next cooler over!) and toys and load the kids into the car and hit the road. We came in and would get the bolus and chemo- and then we got to go home with our fluids. Part of what we miss for Blaise is a routine and feeling of normalcy. I think these cycles outpatient will provide us 5 days of a routine.

 Gang's all here for Clinic!


Blaise was able to keep his feeds going overnight at half the rate- this is huge because we really wanted to keep his weight on the up swing. He also ate 2-3 meals and a few snacks each day.  It was such a comfort to see him thriving- it's been a while since I could say that!

One thing we talked about with the team was that Blaise will get re-scanned and re-staged prior to surgery. For whatever reason, this punched me in the gut. I am so nervous about this because I just want things to remain "good" (Ya know, in the pediatric cancer kind of good). After much reflection and digression, I am feeling better about this necessary piece to our treatment plan.

We got home today, and are technically "off" until Thursday- looking forward to some family walks and likely a lot of the Toy Story Trilogy!  I will say that although Blaise kicked this cycles butt, it still took a lot out of him. As previously mentioned, he has been asleep since 4- the lead up to that was a complete "First World" toddler melt down over not having "It's the Great Pumpkin, Charlie Brown!" on our DVR queue.  Once he calmed down and fell asleep, it did provide for a good laugh.

 Until next time, thank you to everyone for everything!

Weekend Update with Dad!

Friday! Birthday
Friday was Blaise's birthday.  And what better way to spend your birthday than in the clinic!  Blaise and Annie trekked down to CHOP for a follow up to his blood transfusion.  The idea behind this visit was to just follow up and check his counts again to make sure he was ready for round 2 on Monday.  It worked! Blaise's counts rose, and he was ready to go for round 2 of chemo.

We also got some rather good news.  I guess Annie neglected to tell me that kids with Ewing Sarcoma are typically given two choices when it comes to the site of their tumor, amputation or endoprosthetic implant.  Obviously, amputation would be very hard to swallow for me.  And an endoprosthetic implant would mean continued surgeries as Blaise grew, because being a 4 year old he is not done growing.  But the rather good news is that Blaise will not be going through either of these options.  It's also unofficial because we do not meet with the orthopedic surgeon until tomorrow morning.  Because of the location and size of Blaise's tumor the plan is to graft a portion of lower leg, the fibula (which we don't really need), to his surgery site.  The rumor is that in a few years, Blaise's leg will appear to be a typical adolescent's leg. We are a bit away from this happening, but as the guy behind the counter at Oaken's Trading Post in Frozen says, "All good things!"

Also on Friday, a friend of Annie's came by to take family pictures for us before Blaise lost his hair.  She was the same photog who took Blaise's baby photos.  She has real talent, and can even make our family look good! Lucy was obviously ready to go, but Blaise was not.  He had just woken up from his nap, and he really just wanted to watch this new movie, Happy New Year Charlie Brown, ever heard of it?  We had a great time taking pics, and some came out real good.  Blaise was tired and, fixed on the tv, but we still got some smiles! Thanks!

Against our better judgement we had our families over on Friday night too.  Not because we did not want to see them, but because Blaise wasn't 100% and who knows what would happen.  But as they've been telling us all along, get back to doing normal things.  And when it comes to birthdays, we party!  So we went small, just our siblings.  And with families as big as ours, small does not work. Even Blaise's cousins from Scranton came down!  Everyone wanted to come over and celebrate our special little guy.  Blaise had a custom Toy Story cake and everyone sang his favorite song to him, Happy Birthday.  For those of you that don't know, Blaise sings Happy Birthday to everyone and loves every second of it.  He sings Happy Birthday like Annie sings Wilson Phillips!  Blaise still was not himself, but he was feeling good.  Lucy on the other hand was out of control, and assaulted a few party guests.

Saturday!
This was the day I had been promised!  Blaise felt great!  I knew something was up when I heard him walking around his room. I woke up to Blaise out of bed, walking to the bathroom, pushing his pole towards our room.  I asked him where he wanted to go, and simply pointed (toward our room) with a huge smile on his face.  Blaise was back!  I cannot say this enough, this was my son in full force.  He was moving and shaking.  He was joking and playing with his sister.  I think he felt the best he has in years.  And he ate, he ate food and enjoyed it.  We went on a family walk around the neighborhood, we went out to lunch, we had a great time.  It was awesome!  And add in the nice weather to all this, it was a great day.

Sunday
Sunday was another great day.  He felt great, we felt great!  Thinking back to February 3rd/4th, this was my biggest fear.  I specifically asked the oncologist if he would ever feel normal.  She promised me he would.  And I Saw it this weekend.  I took Blaise to church, and it was actually the first time ever I think we weren't late!  He was good throughout mass, said his prayers and got his blessing.  It was awesome, just like we would do before chemo started.  I know chemo only started 2 weeks ago, but to me it seems like an eternity! And I know these words do not do it enough justice, but this weekend was amazing.  Our family was back to normal, and it felt right.  We knew the next round of chemo started Monday, but we embraced the moment, and enjoy every second of our time together.  We even enjoyed a nightcap with friends!

Monday, Round 2
I was very nervous this morning! Coming off an amazing weekend, I was scared for the cycle to repeat.  I did not want to Blaise sad, tired and helpless again.  He was eating meals with us, he was playing with Lucy he was being himself.  I forgot he had cancer!
So the plan was to get to the clinic at 7:30, well we were a little behind schedule!  We got to CHOP at 9:00 am.  And when I say we, I mean all of us, even Lucy!  I don't know what were we thinking bringing our 18 month old daughter to chemo, but they feed off each other and we're all together.

I am still astonished at this situation down at the clinic.  Its amazing.  I can only describe it as if Disney met a doctor's office.  Other than the beeping and buzzing of medical equipment, you would not know where you were.   So the scheduled plays out like this, check counts, get some fluids in him, hang the chemo, check out!  Pretty simple, right.
The first thing we need to do is access his port, which if you read the blog you know Annie has described as a UFC style fight.  Accessing the port requires a sterile environment, so we need to wear masks.  Needless to say Blaise was not in to that.  Annie and Lucy conveniently left the room for this part!  So its me and two nurses left with Blaise, one is accessing his port while me and the other one are holding him down.  It was awful!  Blaise was like the Incredible Hulk on steroids, thrashing and screaming.  It was a scary site, and I could imagine an incredible difficult environment to work in for the nurse accessing his port.  But she did it, and we're good.
Fun fact - Blaise's port is accessed all week for this cycle.  So that scene will not be played out again this week!
So the port is accessed, the fluids begin to flow and Lucy thanks the nurses for visiting her!  She has still not figured out that everyone is not there for her yet!

Blaise did great today.  He was fun and engaging with everyone that walked in, unless you walked in during his 3 hour nap.  He slept straight through chemo and really only woke up because we moved him to get him into the car.

Annie and I had to be trained how to use a new pump and give him medicine because we are doing this treatment out-patient.  It is actually great because he requires 8 hours of fluids after this treatment, which means we'd be spending 12 hours at the hospital.  And I know I say how great it is there, but 12 hours anywhere is too much, unless its home!  So we learned, packed up the crew and headed home!

And here we are, day 1 of round 2 completed.  Blaise is still in remarkably good spirits.  He ate dinner, and had some laughs with us here.  He is currently sleeping on the couch, at his request.  I told him not to answer the door if anyone knocks tonight, and he said he would oblige, so I'll let him stay there!

#Bald4Blaise
What's better than a hashtag?  Yup, the answer is nothing.  So we started one, but its not just a hashtag.  As you can tell we shaved Blaise's head.  And not a day too soon, as we saw hair all over the bed this morning.  But I also shaved my head, as did Blaise's cousins and uncles and grandfather.  Blaise asked me to shave his sister's head tonight, but Annie intervened.  Its just our way of showing solidarity.  Blaise's cancer will go away after treatment, and our hair (well some people's) will grow back.  He seems to dig his new haircut, and he is super pumped his family and friends are following.  He is really excited his Uncle Bob grew his hair in for him!  But let's see what you got world wide web, shave your head go #bald4blaise

Home Again....

Hi All, Annie here (still can't help sounding like the start of a work email).


So, Blaise did well after our first sick admission for fever. He is home on oral (GTube) antibiotics until his counts recover.  This has been a rough week. Physically, it relieved me to know Blaise needed blood- he really looked so tired, so sick.  He perked up considerably after his first blood transfusion. We will go to clinic tomorrow to double check he is on the upswing. However, his anxiety is what troubles us the most these days.

We are currently titrating his feeds up and will reach his goal tomorrow night. So far, he has been more interested in eating and definitely has more energy since starting feeds which was the hope of our nutritionist.

Nerves
Blaise is very quiet.  I will say, he always was a good talker- but he only speaks when he wants to. That can make it challenging to truly understand what is bothering him.  The first night after his GTube, port, and testicular biopsy, I saw him in so much pain. It appears that he is carrying this memory with him.  Blaise is incredibly anxious when it comes to assessing or accessing his port or GTube. If his shirt rides up due to normal little boy activities (playing, fidgeting, etc)- he quickly looks at me and says "Please put my shirt down". The "I'm sorry" that Andrew spoke of last  post have continued- and they get sadder each time.

The Child Life Team at CHOP is committed to Blaisey. They told me that it won't be reminiscent of a UFC cage fight each time I hook him up for feeds, and that it will get better. Things are slowly getting less sore and less invasive- his GTube can be undressed now and he can bathe swim and play with that as tolerated. He is getting better, but he holds on to those memories. Our oncologists frequently tell us this will live with Andrew and I forever, but will just be a blur for Blaise. Days like the last few make that hard to believe. One of our oncologists told us that because he is so quiet and thoughtful, he will absorb coping techniques. So we have tried to normalize his experience. Case in point: Didn't you guys know that Kristoff from Frozen also has Ewing's Sarcoma and a Port, GTube, and Biopsy site?

Birthday
Tomorrow, Blaise is four. A four year old little boy. We are having a small festivity thanks to close friends and family. I wish this was a celebration without my son being sick- the Ewing's Sarcoma elephant in the room sort of let's the air out of the tires. But, I am aware that being brave and being happy for this little boy will resonate with him and in turn lift his spirits. And so for that reason, I am looking forward to celebrating tomorrow.  Here are his new sneakers- he is ready for physical therapy!

Pictures
Thank you, J.  A co-worker and friend of mine is coming to our house tomorrow to take pictures of Blaise and our family before he loses his hair. J also took pictures of Blaise when he was a newborn. I am so grateful for this beautiful gift and it will surely be a meaningful keepsake of this journey. Here is a picture from Blaise's photo shoot as a baby in 2012:

Thank you to everyone for your unending support!  I am doing the most anti-Annie thing and saving all of your notes and cards- hoping to get you each a thank you note, and also to document this unreal journey our family is undergoing.  Thank you all so very much.  Here are some pics of the kids at home enjoying each other (Or their "boppies" aka pacifiers)