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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Friday, January 13, 2012


2012.  A whole new year and a brand new clean slate.  While most people are grumbling about the cold and snow (which I love) and healthy eating and everything else that typically goes along with the month of January....I am sitting in my comfy chair and warm house enjoying the month.  I actually love January! December gets so hectic and busy and but in January there is not much else to do so I get to REST.

For our family, I am pretty much thinking that is is our new normal.  I know that chemo ended three months ago...but then we had all that celebrating concerning that.  And then the holidays.  And then the port came out and it just didn't quite seem like our former lives.  But now it does.  A new normal indeed.  Still plagued with chemo side effects (not sleeping...belly pain....still present) and still punctuated everyday with prayers sent up that our girl's leukemia will never come back.  And still learning how to live without my Mom.  You would think I would have it by now, but I don't.  But this is normal now.

Four years ago, in January, we found out about Mom's cancer. My sister reminded me the other day how I had that sinking feeling when I put my Christmas decorations away that year.  I knew.  I just did.  We spent much of the month in surgeries and driving back and forth to the Cleveland Clinic.  I realize how long it has been that we have been battling cancer when I remember that Carly was a little baby then.  Only six months old.  And now I am starting to look into where to send my baby girl to Kindergarten.  Although much is lost, there is noone more grateful than me and my little family.  So grateful to start a new year now.  So grateful to have finally taken off my LIVESTRONG bracelet because I finally said..."we are no longer battling cancer"  (Ally's Army bracelet...not sure I can ever take that off)

So here is to hoping that 2012 is a good year.  I love having a little extra time to watch a TV show or look at things online or even clean out a drawer if I want to.  I really and truly have not had time to do these things for a very long time.

Ally is doing good with her arm.  She is getting used to it and it is completely covered with signatures from all her friends and Army.  We go back on the 24th to see if it is healed and if she can get the itchy cast off.  One more thing to add to her list of "I have done that"

She brought home some artwork she did at school.  They had to design something around their name...like a biography of their life.  It was quite interesting to see hers...especially next to other kids who have things like soccer, basketball, or friends defining their life.  No...here is Ally's:  Livestrong, Hope, Faith, Ally's Army, truth, and relentless covering much of her design.

But our old neighbors and friends, who moved on to be the Bball coach at Clemson...well they will be happy to know that they earned a big spot on her design.  Go Tigers.

Ally's artwork.

Happy, HAPPY, 2012 and may everyone be blessed with health this year!

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Thursday, January 5, 2012

Oh No!

YES.  'Tis True.  Just 5 days after her surgery, she was just starting to feel like she could move again.  She has been pretty faithfully "working out"....which she does to try to get her strength back . She still suffers from horrible ankle pain.  Anyway, she was bouncing on top of one of those large exercise balls.  Her brother was right next to her bouncing way too high on his exercise ball.  Next thing we knew, he had kicked her ball out from under her and she was flying backwards only to catch herself with her arms.  She immediately started screaming and crying.  Jerad and I were both right there and saw it happen.  And I immediately felt a pit in my stomach.  We always worry about her breaking a bone doing something.  28 months of steroids has made her bones very weak and brittle.  We knew that.  We iced her arm immediately and wrapped it in an ace bandage all night.  We didn't take her in....figuring orthopedic would be closed (it was evening) and we would have to wait anyway.  She could move it also, which made us feel better. 
Fast forward to the next morning.  She had been up several times during the night in pain and it wasn't get any better.  I called her old pediatrician figuring this was a "non cancer" related issue.  And they couldn't get her in with him that day.  UGH.  Seriously. (Who does this when you say your child broke her arm?)  So I called down to Dr B and he just ordered up an x-ray taking my word for it.  Less than an hour later we knew she had fractured her arm.  About 3-4 inches above her hand, and luckily the break was also above the growth plate which can be tricky.  She knew right away that she was choosing an orange cast for Ally's Army!  The cast will be on 3-4 weeks.  The radiologist did let us know that her bones are especially weak and thin and he wanted her to keep drinking her milk and also continue exercising.  The only thing that can help her bones build back up. We did have to pull her out of the basketball league that was due to start Saturday.  She was disappointed, but we kinda took this as a sign that she wasn't ready anyway.  And it's pretty hard to play piano with a hand in the cast too.  But she is gonna keep doing modified Taekwondo. 
To us a broken arm is no big deal . We can handle it.  After everything we have been through, this is small potatoes.  There is one annoying part...We don't mention this part....but Ally pretty much never sleeps all night.  Maybe once a week she sleeps through the night.  It is like having a baby.  She has insomnia a lot (also from the steroids...HATE those) and she repeatedly gets up and then wakes her Dad up to "help her get back to sleep."  We had almost reached the end of our rope with this...because we can't really help her sleep anyway.  It is so frustrating that there are so many things we just can't fix.  Just one more aspect of childhood cancer that I hate. So now to add salt to our wounds....last night I think she was up six times.  Itchy cast!!!  And of course she woke her Dad  to try to stick stuff down the cast and scratch her arm.  Holy cow.  
So here's hoping to more sleep!  And a healed arm.