Tuesday, January 31, 2012

Clinic Visit and Dayton Children's Commercial

Ally had her monthly visit with Dr Broxson today.  This was her first visit EVER without a port.  No antibiotic infusions, no port flushing....just a blood test and a thorough check-up.  Now that she doesn't have the port, we have to go to the lab first and she gets a blood draw.  Not a big deal for her though...I am happy to report all her numbers remain in a good range!  Her ANC is now above 4000 and we are seeing numbers we have never seen before on her hemoglobin.  She did suffer much of the month with a headache, but Dr B attributed a lot of it just to the cruddy weather/sinuses/and other typical stuff. 

What I didn't know was that today we would meet with the nurse director of what they call the "Long Term Care clinic".  Ally will go to this clinic 5 years from now, when she is 15 years old to be monitored for all the of the long term side effects of her chemotherapy and radiation.  For the next five years we just continue to see Dr. B.  You would think as a mother that I would know a lot about these side effects, and I do know some of the basic things.  BUT I have honestly been putting it out of my mind for a long while now.  It sounds ludacris, and the "old Janel" would never have not looked ahead...but for so long we just had to get to the next thing...the next step.  I had to just make the climb one rung at a time, if you will.  I kind of knew that this "talk" would be coming soon though and today was the day.
So they showed me yet another big binder that they have prepared for us.  This one being the "off therapy" binder.  Inside, is a road map of all the cumulative chemotherapy and radiation that Ally has been given.  They take each drug....add up all that she got over the 28 months of each one and give us a cumulative total.  And from that, you can kind of see where her risks are. 

1)  Risks to her heart.  They are going to do an ekg soon and then every two years probably til she is 25
2)  Infertility, ovarian damage....this one hurts me.  They do think her risks are low on this, but the risk is there.
3)  Cataracts
4)  Bladder/Liver Damage (from all the chemo running through it)
5)  Secondary Cancers
6)  Post traumatic emotional issues ( I think I have this one)
7)  Comprehension/focus issues.  Trouble with school, etc  (this one is from the radiation doses)  This one scares me and can crop up at any time.  I will say that the girl works very hard and has straight A's the last two quarters for which I am super proud considering all she has been through.
8)  Brain tumor (20% chance of this.  sigh)
9)  Osteoporosis (bone thinning) ....she already has signs of this one and thus the broken arm.  She will have Dexa Scans to evaluate this. 

hmmmm.  So it is a lot for me to take in and think about.  We just started feeling a tiny bit of relief after having a few good blood tests, but then we are quickly sprung back into the world of childhood cancer and all the things that it has robbed from us.  And how we will keep going to Dayton Children's for about 15 more years.  Even as an "adult" she will go to their long term care clinic.  It's good....it's amazing and wonderful that we have gotten to this point, but I still feel anger over the fact that it has happened in the first place.  And will pretty much affect her entire life!!  (and mine!)

Spending time at Dayton Childrens is what we do best!  Jerad and I were just interviewed for a new commercial for the hospital.  They made three new commercials.  I think it was one for the NICU....one for trauma...and we were, you guessed it, the long term care family.  The commercial will be Jerad and I and Dr B!  Wow it was super hard.  I found it way harder to talk to a "camera" than to talk to a live audience.  You would think it would be opposite.  I felt like a robot and I am scared it will come off that way on TV.  I will try to post it here but look for it to air either during the Superbowl (eeeeeeeek) or else during American Idol.  Well anyway, I did the best I could and continue to try to make a difference and an impact using Ally's story. 

Here we are filming in front of the green screen!

I even got some make-up touch ups (thank you for that!)

Thanks to all who still check in our girl and continue to pray for her to have a long life of health! 

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