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. 

Thankful

We had so much to be thankful for this Thanksgiving.  I do believe that this Thanksgiving was the first one since 2007 when I felt more happiness than sadness.  I always feel grateful and blessed, but sometimes the sadness can still linger in there.  First it was Mom, then it was Ally, but now we are walking down the right path again.  We had such a beautiful Thanksgiving.  Dad made a great Turkey...and all the girls made the fixings and we sat around a nice table and just enjoyed it.  And we have a new baby in our family to snuggle!   BONUS!  And I was on some sort of endorphin high because I did my first ever 5-mile race courtesy of some encouragement from my friends Lara and Jenny.  I have never ran that far in a race but it was a great way to start the day, for sure.  I have attached some pictures from our fine day of thanks.  

We also got to spend some good quality time in Junction City over the weekend with Jerad's family, and watch the Buckeyes play in the big game..... well never mind.  There is always next year!

Right before Thanksgiving, we were actually at Dayton Children's for Ally's monthly check-up.  Even though we had a bad day with her port (four times to access her and much yelling and crying...including her little sister crying because she had to watch)...we had a great report on her numbers.  I am thinking that could be the last time they access her port (barring any fevers) because Dr. Broxson said she could have her surgery to get her port out a few days before Christmas!!!!  Big news.  They will also do a bone marrow biopsy that day (from her hip) to make sure her marrow is free of all leukemia cells.  I would, of course, love some extra prayers for this particular test.  This will be her first bone marrow in over two years.

After our appointment, we also got to be a part of the live K99.1 radiothon in which they raised over $200,000 for Dayton Children's.  I can't believe how many people heard it!  I was quite nervous to speak live on the radio.  No chance for messing up or doing over.  And Nancy Wilson does it all day long without fail.  Amazing work they do with radiothon.  I don't think I ever even realized how impactful that is on our community.

And the question that got me (LIVE):  In the quiet and darkness of night did you ever think about losing Ally?  and do you and Jerad still worry as much now, or has the worry subsided a bit?

And the answer to that question is YES and YES.  I think I am still a few years out from being able to take my worry level down a notch.  I worry now more than ever that the chemo is gone.

But God is good and we are hopeful.  And thankful.

K99.1 Radiothon

Every Year K99.1 FM does a radiothon during Thanksgiving week and the proceeds benefit Dayton Children's.  I can remember hearing about it in the past.  This year, they asked us to come to the station and tell Ally's story to Nancy Wilson.  You may have heard of her also because she is very active with the LLS. She just lost her co-worker and very dear friend Steve Kerrigan to blood cancer within the past year.  Of course, we agreed to help as we would do anything for Dayton Children's.  We all sat in front of these huge microphones for a couple hours and answered questions, etc.  Nancy even met with Ally on her own, because she was more likely to speak when Jerad and I weren't there.  (She always defers questions to us)

So they took all the talking and edited it down and put it to her song...Ally got to choose...and the song is "The Climb" by Miley Cyrus.  I remember posting the words to that song out here in the very beginning of her treatment.  We used to listen to that song to inspire us to keep going.  And now here the song is being used to tell Ally's story...with her voice, my voice, and Jerad's voice dubbed in.  They did a remarkable job and I hope that it helps to raise awareness and money for the hospital.  I hope you will take a minute to listen to it here...or even tune in next week.  I saw a full page add about the radiothon in the Dayton Daily News today.   

This is Ally and Nancy in the recording room.  You should be able to press play to hear the song...

Nancy let us go in to Channel 7's studio while the news was on.  (it was 6pm)  Very cool.  And then we got to play a little!  Ally's shirt was green so she blended right in.  I guess the weather people cannot wear green!

 I even got to sit at the weather desk.  Anyone who knows me knows I love some good weather drama!  Bring on the snowstorms!

 And here we all are.  This might explain why Evan told me at bedtime that he is "famous"....I was like, uh, why???  And he says....you know the Ally's Army stuff.  He is really just so used to it.

I loved all of the comments after my last slideshow.  Running Ally's Army gets to be some work!  Always good to hear people's reactions when I spend hours doing something!  Dayton Children's even hooked it up to their website.

Thanks again for following our story and praying for our girl.

Special Video

Blogger friends:  I know I have been neglectful.  I know I used to put info out here almost daily and now I am lucky to post once a week.  I know this has made some of you sad, and yet some of you happy.  For those of you that have been wanting more....I worked all night tonight on a video/photo slideshow of Ally's last spinal tap at the hospital.  With Dr Broxson's permission (of course) he left me document the day of her very last spinal tap and chemo infusion through her port.  You might wonder why on Earth I would want pictures of this??  A video montage, really?  The reason is mostly for Ally.  The entire 28 months she never remembered one minute of her spinals.  This was the way it was supposed to be and I never wanted her to know what was going on because I never wanted any FEAR to enter the picture on her part.  But the truth is that she was curious as to what happened.  And she deserves to know.  And one day, a long time from now I pray, she will look back on this with pride and strength and gratitude.  She has seen the pictures, but not yet this video (it is midnight right now!)

And the music is specially picked.  Katy Perry (one of our faves) and her song Firework.  If you have never seen the video, view it next!  She features a kid battling cancer.

But the video is not just for her.  It is for me.  And her Dad.  And her brother and sister someday.  And for anyone else out there in the blogosphere who just wants to know what a spinal tap is.  And how a little girl looks while going through it.  But for most of you it will just be to see Ally....doing something that she did I believe over 20 times.

Please watch!  Because I spent three hours making it and a bunch of my day taking pictures for it!

And I pray we never have to do this again.  Amen.

Surprise Vacation Pictures

 Here are a few pictures from the surprise vacation that we took to celebrate the end of Ally's chemotherapy.  I have such fond memories of this trip!  We got to have the best of both worlds...a few days at Disney World...and a few days of just relaxing at the beach and the pool.  Everything went so well, and everyone happily got along.  It was kinda nice to just focus on the five of us and being together and having a good time.  Here we are with the most famous Mickey and Minnie!



Highlight for Ally:  Celebrating her 10th birthday at Disney World complete with fireworks after her birthday dinner!



Highlight for Carly: Meeting Cinderella and believing it was really Cinderella. 



Highlight for Evan:  Riding on Pirates of the Carribean, his most recent fascination.




Highlight for Me:  Relaxing on the beach with my family and looking for sand dollars.




Highlight for Jerad: Playing the famed Harbourtown Golf Course.  Oh wait, that was when we went to Hilton Head.


It will certainly be a trip that we never forget!