Hey gang,
Still there? Who knew I neglected updates this long...eesh. I'll try and make this one a quickie....but I must say this explains why I was getting so many questions!
Where we left things last March after Evie had surgery, we knew Evie needed to start more treatment but her team definitely took their time deciding what the best decision was going to be. Given Evie
had previously tried 4 other protocols, it was time to maybe think
outside the box a little bit. After much discussion, we agreed to a new
line of treatment on a trial basis, which started in May. The chemo
itself is meant to be very low impact on her daily life: its a liquid
that we give her orally at home every morning. It does not compromise
her immune system, and it has maintained a fairly normal quality of
life.
Now being eight months since she started, I can say that Evie
being on this drug has not been all roses and sunshine. It's true, she
has been able to go to school and her activities, she attended camp and
even went to her first full weekend at Camp Ooch in the fall (!!!) but
there have been difficulties. As this drug is very new, it is very
closely monitored. This means I'm at the hospital a lot with Evie,
and she is being monitored with a whole bunch of tests to see how the
drug is working including x-rays, ECG's, and Echo cardiograms - all part
of her new routine. This would be on top of the other regular follow
ups with her other departments. There have also been side effects.
Most notably, Evie developed a skin rash. It
started over the summer, and gradually got worse throughout the fall.
We had been treating it with a few different creams as it got worse, but
eventually it was decided that the best course of action would be to
"pause" the chemo to give the rash a chance to clear up. The long and
the short of it is, even though the rash cleared up off treatment, she
still needs to be on chemo, so after a few weeks we restarted the
chemo. As expected, the rash is returning, but at least we have some
measures in place already, and don't need to wait to treat it with
topical creams. Hopefully we can keep it to a minimum.
Last week Evie
had her 21st MRI. The results may be a bit skewed because she was
technically off treatment for 4 weeks leading up to the scan, it's hard
to know really. The team has let us know that it looks like there has
been slight tumour growth since her last scan in October. They are
encouraging us to stick to the course with this new drug, at least until
we can scan again in April. By then we'll have a better idea if this
is the right course of treatment....so, it's not the best news, not what
we are hoping to hear, and as often is the case, it's a bit of a
waiting game.
There are really no other changes or updates about Evie
- she's doing well, she's in SK, she loves being a Spark, and is
currently in ballet and swimming....both of which make me busy weekend
mornings but are very fun to watch. Isabelle has hit her stride this
year and is doing really well at school, and at cheerleading (yes, this
is totally a thing, and it's pretty fun to watch) - and she loves it.
One
last thing I'd like to share. A few weeks ago I was asked to speak at a
Neuro Science Conference at SickKids. I was on a panel about Optic
Pathway Tumours, alongside a surgeon, Evie's Ophthamologist, and Evie's RN on the NeuroOnc team (she has been our main point person for the new protocol Evie
is on). I was asked to shed light on the patient experience, our
family's journey...so I refer to my roll as the "fluff piece"....cause
really, when you're surrounded by this bunch...ha. The conference was
today, and I did my thing. As a part of my speech I showed a video,
and I thought I'd include the link and share it with you (so click
that). The full speech can also be found on my blog if you're so
inclined.
That's it for now. The next few weeks are bound to be busy, but we'll be sure to keep you posted!
Paul, Kristine
Isabelle and Evie
"and though she be but little, she is fierce"
#fightlikeagirl
#runwithrockstar
#eviesteam
