Friday, February 26, 2016

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!