Wednesday, November 13, 2013

So our daughter has cancer...... now what??

Now that we had our diagnosis, it was time to take action.  Once we received word that her brain was clear, Dr Shapiro (retinal specialist) & Dr Goodell (oncologist) felt comfortable taking steps to start the Chemotherapy process.  

We were given 2 choices for treatment:
1. Enucleation- removal of the eye.
You never want to imagine what its like to decide if you should remove your child's eye. It may be shallow but the possibility of yourself and others judging a little girl for missing an eye, is real. And that stinks.  The first thing you notice about a person is his or her eyes- they tell so much about a person! They are windows into a person's soul! I'll never forget seeing Ania's blue gems for the first time after she was born! Breathtaking to say the least.  Would she still be our precious little girl even if she was missing an eye? OF COURSE. Would she still be the bright, bubbly, strong child she is with one eye? OF COURSE.  I just can't imagine it without turning into puddle of tears....
Luckily, we may not have to go down that road- although, if it goes that way at some point- I'm sure Mike and I will gain our composure and strength about the issue and do whats best to save our child's life. No doubt about it.
Just look at those baby blues! Ania at 2.5 months
2. Intra- Arterial Chemotherapy (IAC)
Again, you never want to imagine what its like to decide if you should pursue chemotherapy for your child either.  Injecting a poison into your child with hopes that it only does one thing- kill the cancer without harming her in other ways? Yikes. 
Without getting too technical- I will try to explain what IAC is and how it works and what side effects to expect....
IAC is not your conventional systematic chemotherapy.  It does not travel throughout her entire little body's venous system like you would expect.  Rather than being injected through her venous system, the drug called Malphalan, is injected into her femoral artery which travels up to her ophthalmic artery and directly to her left eye.  Basically it is a straight shot of the chemotherapy drug to the eye. Bullseye!  
Malphalan is very effective against retinoblastoma but it is not suitable for conventional systemic (venous) chemotherapy because it has a high risk to destroy bone marrow. However, in Ania's case, it is given intra-arterially at a much lower dose and targeted directly to the eye so it is much less likely to cause any severe adverse side effects. IAC has been shown to provide reasonable chances for preserving her eye and potentially some vision. This type of treatment has only been around for the last 20 years (mostly in Japan) so it is a very cutting edge type of plan we've got in place!  If you are the nerdy scientific type- check out this website to see in more detail how it is done  HERE

After the delicate 2 hour procedure, Ania will have to lay flat on her back for 8 hours so the injection site can heal properly. A 3 year old- laying down for 8 hours?? We'll see about that ;)

Dr Shapiro & Dr Goodell both felt that Ania was a good candidate for this procedure.  We feel that in the hands of Shapiro, Goodell & Grobelny- we have a good shot at saving Ania's life, her eye and potentially restore some of her vision (way down the road from that last piece).

What are the side effects/risks of IAC?
~ nausea/vomiting (although lower risk than traditional chemo)
~ hair loss generally limited to eyebrow, eyelashes, and/or nose hairs on the treated side
~ local ocular complications: swelling of the eyelid, retinal detachment, vitreous hemorrage, eye pain
~ wheezing/acute bronchospasm
~ allergic reactions
~ risk for second malignancy including acute myeloid leukemia
~ infertility (hard to say how high of a risk since this has been only around for 20 years)

While that list is not exactly great- we are going on faith that she will handle it all in stride and be closely watched by us, her doctors, weekly blood labs and check ups for a long long time after her treatment cycles are over.

How long will she have to undergo IAC?
Most likely, Ania will have SIX treatment rounds every FOUR weeks. That means, we will be doing this routinely through April 2014.

What happens if it doesn't work?
We'll cross that path when we get there.  Hopefully we NEVER get there. Just know, we will do what it takes to save her life.

My next post will chronicle how Round 1 went for our Dainty Warrior, which took place on November 6th 2013.  Let me just leave you with this teaser:
Ania a mere 3 days post Round 1 treatment. Seizing the day...and the fall leaves!
 God Bless,


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