Our commercials

I am sorry to our out of town family (and non-facebook Army members)...took me a whole week to get this up here.  But these are the commercials that we did for Dayton Children's.

This is the one that is Jerad and I and Dr B.  So glad they didn't use my words because I found that I completely froze up when having to talk to an inanimate object (camera)  Luckily Jerad pulled through and did his part in 1 or 2 takes.  vs. my 18.  Think I will stick to the blog.

I was completely amazed how many people saw these.  They played during the Superbowl and I guess maybe that is the only time of year people don't fast forward through commercials.  I have random people I have never met saying stuff to me.  We were at the hospital the next day and they were all the buzz.

I do have to say I was quite proud of these.  Not really for any profound thing that we said just because our friends at CMC thought we were worthy enough to share our experience.  I feel a huge debt to them that I can never repay in anyway.  They saved my child's life.  So I am always trying to find a way to pay it back to them even if it is something small like this.

So here ya go:
First one is shorter version.  I also learned Dayton Children's is in the top 11 of pediatric cancer hospitals in the country.  Our small town should be so proud.

This is the longer one and our story is towards the end.

Finally, the reason Ally was at the hospital on Monday was to start her testing for the long term side effects.  Several chemos are hard on the heart.  They got a base echo and ekg the day she was diagnosed.  So now we were gonna get our first look almost three years later.  Dr Ross (our favorite) checked her out.  He is married to one of Ally's favorite nurses in the clinic.  I thought all was fine until he thought he saw a plastic piece of her port tubing still in her artery.  UH...yea lets get that out.  So we had to do some additional chest x-rays and wait for a very painful hour with her asking me...how will they get it out...do I have to have surgery again??!!....and me just praying for about an hour straight.  Turned out to be OK.  It was some scar tissue that basically grew around the port tubing since her port was in so long  (2 years 7 months!)  He said they would watch it and it will dissipate in time.  Her other heart tests just showed some very mild changes and he said we have nothing to worry about for the time being.  They will keep checking her every year.

Thanks for those of you still praying for our girl!

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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Update

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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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. 

Surgery Day

Happy New Year 2012!  I would now like to get up on my rooftop and scream this for all the world to hear.  We got the results from her bone marrow test:

No evidence of leukemia.  No evidence of relapse. 

I repeat:  No evidence of leukemia.  No evidence of relapse. 

Here she is right before she went into surgery.  You will see Bobo.  She also has her little bird porty.  This the bird she picked out at the gift shop about an hour before her port went in.  I remember feeling so so so so bad for her.  I pretty much told her she could buy the whole store.  She picked out this little bird and named him Porty.  Right after they put the port in, Porty would sit right under her shirt and protect her from any bumps or whatever.  She was so sensitive about that port.  She even slept with Porty in her shirt. 

And then sweet Miss Vicki brought her the lucky ladybug to wish her luck with the bone marrow test.  And it worked!

Here she is after.  A little puffy and groggy, but I am telling you the girl was a trooper.  The same girl who threw a giant tantrum over her flu shot never cried a single tear all the day at the hospital. 


Here is the incision.  About three inches.  They also did the bone marrow in her hip bone.  Those steri strips hold her together until it heals and then they fall right off.



And here she is resting (with Bobo).  My sweet little girl I could not resist taking this picture. 

And this is her actual port!  She asked if she could bring it home and her surgeon let us!  He even cleaned it all up for us.  It laid underneath her skin so we could never see it.  But the nurses would access her right in the blue spot in the middle.  The chemo would then travel down that white tube which went right down an artery into her heart.  Then the blood would pump out of her heart and distribute the chemo or meds throughout her body.  What an amazing invention and one that saved my daughter's life.  I am not sure what I should do with this now, but I am glad that we have it. 

 

The news was awesome to hear.  I waited on hold for about 10 minutes the next day to hear the results.  I could almost not breathe because I was so nervous and anxious to hear the news.  I know this does not mean she is "cured" by their definition.  We can't get to that point until five years out.  But it is a giant victory to us to go three whole months without chemo and still be cancer free.  They will continue to check her blood counts every single month.  For the first time in almost three years her hemoglobin was high (normal is 11-14 and she was 14.9.....she was 4 when diagnosed)

 

Another dear friend said to me.....do you know that this is the first time in four years that you are not actively fighting cancer???  Wow...I had not even thought of that!!!  Four years is a long time.  Especially when it is your mother and your daughter.  I will take this new life.  Bring on 2012 and a normal life for my family of five. 

 

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Port Removal Surgery Dec 28

I wanted to take this opportunity to say Merry Christmas to all our followers in the blogosphere.  2011 proved be a much better Christmas for our family.  We continue to be very aware of all those still fighting the disease and will never forget our Christmas in the hospital two years ago.  These memories continue to define who we are and make us very grateful for being in the place we are in now.  I thought I would share the Christmas card we sent out this year.  

We have a very big (HUGE) day coming up tomorrow.  Ally is scheduled to go into surgery to have her port removed!  This port has resided in her chest for 2 years and 7 months!  A lot of kids end up having two or three ports due to infections, but her trusty port ended up lasting the entire time.  So tomorrow is the big day...Dr Christian, who put her port in and is a fellow board member with Jerad, will take her port out at 12:30pm.  At the same time, while she is asleep, Dr Broxson will come into the OR and do a bone marrow aspiration on Ally's hip.  He injects a large hollow needle into her hip bone and pulls some marrow out . This marrow is then tested for any trace of leukemic cells.  I am thankful they are doing it while she is asleep because it hurts!  I am more concerned about this part of it than the actual surgery part.  Her marrow has not been tested in about 2 years.  I am not sure if we will find out any results tomorrow or if we will have to wait.  Please say a special prayer for her and I will post the results ASAP.  All along, this has been in my mind as the end of her journey.  I know it is not really the end with all of the follow ups etc.  The poor girl still suffers every day from side effects such as weak and painful ankles and feet and insomnia, but after all we have been through we just have to learn to live with it.  Every headache, belly ache, and pain still cause us heightened alarm.  But if her marrow tests out good tomorrow I do think it will be a huge sense of relief for Jerad and I.  (She is, of course, not nervous at all...and she says it.  I even told her she has to get an IV, because they can't use the port they are taking out, and she just says "OK") We are not allowed to be with her tomorrow, but she is allowed to take her Bobo.  She will be in good hands though.  

One more time...my brave Ally girl....one more big thing.  And then you will be well on your way to being the  "normal kid" you so desire to be.  

It's beginning to look a lot like.....

CHRISTMAS!

Visit with Santa 2011

We are pretty excited about Christmas coming this year.  The last few Christmases we kinda "got by" so we are trying to really go with it this year!  I am trying to be extra prepared, but even so I still feel behind.  My blog has suffered as a result!  I love looking at this picture with Santa.  For one, this is the first time that Carly ever sat on Santa's lap without screaming her head off.  (she did have a minor cry after she got done....I think the stress of it got to her).  But secondly, LOOK AT MY GIRL!  I love seeing Ally smiling and vibrant and happy.  She is back to being her normal goofy self...a side of her that I have not seen in over two and half years.  I don't think we really realized how much the steroids were bringing her down (moodwise) and so now when she gets laughing and being goofy it just makes me all that more happy!  And Evan, well Evan actually had strep throat in this picture...we didn't know it at the time, but 'tis true.  So now we are just hoping that Ally and Carly don't come down with it.  Especially with all of the holiday celebrating coming up and also because a fever still means a mandatory hospital visit and IV antibitiotics for Ally.  I am crossing my fingers.  We only have to make it 16 more days and then that rule will not apply.  They have scheduled Ally's surgery to have her port removed.  It will be done on December 28.  This will be a good time since she is off school and can just take it easy.  They will also be doing a bone marrow aspiration on her. 

Ally has become one busy girl this year.  She wants to do everything and who am I to tell her no.  So I do my best to get her everywhere and let her do as much as possible even if it runs the rest of us ragged.  She currently takes piano lessons, does Tae Kwon Do twice a week, is on Student Council and Girl Scouts after school.  She also takes a religion class twice a month, on top of regular Sunday school classes every week!  I just signed her up for a winter basketball league too.  Dr B wanted her to do something physical so she wouldn't have to do physical therapy...so we just took care of that. 

We are truly counting our blessings this holiday season.  And wish the best to you and yours.