Wednesday, December 28, 2011

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 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. 

- Posted using BlogPress from my iPhone

Tuesday, December 27, 2011

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

Monday, December 12, 2011

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

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 we just took care of that. 

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