Sunday, December 30, 2012

Counting Down To A Truly New Year

I don't think I have ever been so excited to see a year end.  2012 has been in some ways the most incredible year ever... but of course, also the most painful year. My head literally spins when I try and wrap my mind around everything that has happened.  So I don't try too often. With the count down to a new year also comes our countdown to Scan #2.  January 7th, Kayla and Denny will be on their way back to Memphis to visit old friends and hopefully once again hear those magical words, NED. (No evidence of disease)  Denny has returned back to plumbing and is also taking a full load of classes to continue his pursuit into medicine.  Busy is an understatement and makes me miss that special family time we had just a few short months ago.  We are hoping for simplicity to enter our lives this year. We hope for continued health and healing for Kayla.

Have you heard of Make-A-Wish?  It is an incredible organization that grants one very special wish to children (under 18) who have been diagnosed with a life threatening disease.  Because Kayla will not be considered in remission until five years after treatment (June 2017), she for sure qualifies.  What did Kayla wish for?  A trip to somewhere tropical to swim with the dolphins and snorkel. Last week we got word that Kayla's wish will be granted! We are so excited to finally take our very first family of four vacation ever!!!  So, we will be in Oahu, Hawaii over Kayla & Denny's birthdays this year (and mothers day too!) We originally wanted to wait a year.  To spend time getting back into our routines.  To let Kayla continue to be even more healed.  But the reality is that routines and health are something that can change in the blink of an eye. Boy do I know this! I hate that she has a life threatening disease. I hate it.  I would rather have her guaranteed health than be able to go on a vacation or any other thing in the world.  Unfortunately, that wish isn't so simple. So we will take this incredible gift of time together and enjoy every second of it. I know we will make memories that will be cherished forever. Thank you Make-A-Wish!

There is breakthrough news happening in the world of Pediatric Cancer when it comes to blood cancer though.   Children's Hospital of Philadelphia (CHOP) has discovered a new incredible treatment for patients with Leukemia.  It is deemed "fighting fire with fire".  Could injecting patients with HIV cure their cancer? It's happening. Just incredible.  Have you heard of this yet? If not, you should really Click here for the short clip of this new treatment available .  Doctors have seen great success and I am praying this is the cure for our sweet friends Matthew and Phoebe.  Phoebe is our precious tiny friend from Canada who we met at St. Jude during her second transplant.  On December 1st, Phoebe and her family celebrated being 1 year cancer free after two gruesome transplants.  Only 10 short days later, my friends learned the devastating news that Phoebe had relapsed once again.  Not only did leukemia return, but she also had a cancerous tumor in her pelvis. This new treatment at CHOP is not a guaranteed successful plan, but the doctors have seen amazing success from it.  Phoebe and Matthew need this miracle.  Phoebes cells have been collected and they are sitting in Philadelphia where doctors are watching them and hoping the previous steroids that she was given to control the cancer do not affect the growth in her cells. You will all want to follow this incredible families journey.  I am amazed at Jenny's optimism and strength. Such a beautiful family.  Click here to follow Pheobe's story

This year we were lucky enough to spend the holidays at home.  There wasn't a second that went by that I wasn't truly grateful just to be all together... as a family of four.  It is something I will never ever take for granted. You might remember the last post where I talked about the very important petition that could finally appoint a Pediatric Oncologist to the National Cancer Advisory Board?  Thank you to those of you who did sign this petition. Unfortunately, there were not enough signatures and so this did not happen. Once again, the advisory board is filled with Adult Specialists.  Not that we don't need those! But we have the funding there.  I can not say how devastating this is to the families who sit here and watch our children fight.  They too deserve a voice.  Recently, I watched one of the most moving short documentaries ever.  You would think that I would already know all of the facts and statistics.  This was shocking.  Disheartening.  I can't get it out of my mind.  It's only about 30 mins long and I guarantee it will move you and you all will truly understand why I can't stop fighting to spread the truth. Not only do us families have to go through this, but we also have to be the voice. We are the ones who are trying to raise awareness and BEG for people to hear our cries that we do not have the funding needed to change the way these kids are treated.  The medicines they receive are way too harsh and are not specific enough to their type of cancer.  It is not fair that no new drugs have been approved in over 20 years. We can do better for our kids. They are our future.  In the end of this incredibly moving documentary (created and narrated by a child who is a cancer survivor), there are ways that we all can help.  I LOST it when I saw that Dr. Gajjar is one of the doctors who gives his time for free to help.  Such an incredible team of doctors who truly want to see change.  Please, watch this video. I promise you too will be sharing it with everyone you know. It's that good.

I long for a day when no one else ever has to know this fear. This pain. This truth.  Every headache continues to bring me to my knees begging that it's not something more.  Recently Anthony had a head ache that lasted 3 days before he finally had a horrific fever.  All I could say was THANK GOD. Thank God it wasn't something more.  I long for a day when we can all say, "Oh... just cancer?  No problem. There is a cure for that".  Or better yet, a vaccine.  It will happen one day.  Us parents and pediatric oncology teams will see to that.

 New PJ's and special drive to see all of the lights. Mommy's favorite Christmas Eve tradition!
 I love love LOVE this picture. We do believe! (The Christmas House)
 Kayla lost her 9th tooth! #10 will be out soon too. LOOK AT THOSE CHEEKS!!! :)

Good bye 2012 and HELLO 2013.....

Tuesday, December 11, 2012


 Hello friends. I know you all are busy... tis' the season, but I need help! I want to urge you to do something right now that can help make a change for kids fighting cancer.  There is a new petition out right now that is going to directly to President Obama.  We need to act fast. Only 3 more days left!!! We still need 18,757 signatures for this to pass. Time is running out. Please help spread the word!

Appoint A Pediatric Oncologist to the National Cancer Advisory Board

Please sign this petition to urge President Obama and National Cancer Institute Director, Harold Varmus, to appoint a pediatric cancer specialist to the National Cancer Advisory Board in order to give a voice to all children fighting cancer!
The National Cancer Advisory Board is the advisory council for the National Cancer Institute. The board helps set the strategic direction for the NCI and has direct input on grant and funding decisions.
National Cancer Advisory Board Members are appointed directly by the President. Currently, there are no pediatric oncologists on the panel.

If you are on Facebook or Twitter, please share the link. Email it to your friends and family. Thank you to all of you who have done this already and those who will. God knows we need all the help we can get to get more funding. Thank you!!!