September 21,2012….AMAZING GRACE and a treatment that worked!!!!

Thank you GOD is all I can say or think right now! Just got off the phone with Dr. Kanter and scan results are showing that the tumors are dying and all is negative for active or new disease! We are so overwhelmed with joy right now! Treatments, along with countless prayers and FAITH that could move moutains, WORKED….they WORKED!!!!!

So the plan is to head back to Philadelphia on October 10th so Bailey can do another round of this treatment. Although we have great news and great scans, we want to be sure every little lingering cell is blasted! So we will prepare for another rough treatment but at least we are going in with lighter hearts and reassurance that what we are doing is working!

Thank you all for the prayers and support…there is no doubt in my mind that prayers change things! I know we are getting these blessings because of relentless prayer warriors that are not giving up on my little girl. I am so blessed that God has allowed my little girl to stay here with me…

The other day Bailey and I were talking about “things” and she says “Mom you know I am one of the luckiest people” and of course my first instinct was to snicker and say well if you are lucky then I hate to see unlucky, you have been handed one of the crappiest hands in life…but the more I think about it she is so right…We are so very lucky and so very blessed! You have to see the blessings right in front of your face to have an appreciation for what life brings you. If it were not for this horrible disease we would still be living life by rushing through our days and taking things for granted, but we don’t live that way anymore. The fact is we are lucky…lucky and blessed with God’s amazing grace!!!

September 11, 2012….Go Gold for a Miracle!!!!

So it has already been a month since my last post…to say we have been busy would be putting it lightly. Bailey is still struggling to recover from the treatment and has been having to get vampire food (blood transfusions) and platelets twice a week. We did have a fever scare two weeks ago but thankfully that is all is was…just a fever that scared us more than anything. After a round of IV antibiotics and a week of oral antibiotics all is well.

 Regardless of how busy we have been and what little sleep we have been getting we are still so very thankful to be home. Bay is so ready for this recovery thing to be over so she can get to school with all of her friends. Unfortunately because her counts are so low and because we are having to go to the hospital three times a week right now, she isn’t able to attend school…which normally wouldn’t bother her but for some reason 4th grade is a really big deal to her and she feels like she is missing out. So praying this will happen for her soon so she can resume the somewhat “normal” routine of a typical 9 year old.

Well scans are next week (18th and 19th at Tulane in New Orleans) and of course I am so ready! Ready to see what the treatment did to all of those horrible tumors and ready to know what the next step will be. I am praying for clear scans, as always, so my little girl can get on a maintenance treatment that allows some quality of life. No frequent hospital visits, no low counts, no nausea, no diarrehea, etc. etc….just a treatment that keeps the neuroblastoma out of her little body and allows her to be a kiddo! I am firmly believing that will come to pass…we have faith that is relentless and a GOD that is soooo much bigger!

September is Childhood Cancer Awareness Month! One might ask why it is so important to spread awareness…well here are a few reasons why:

1. Some cancers (like Bailey’s) have NO CURE!

2. In the past 20 years only 1 new drug has been approved for childhood  cancer.

3. No child should ever have to be bald… unless it is by choice.

4. No child should ever have to learn what it is to “flush their line” let alone do it themself!

5. No parent should ever ever ever have to hear “Go home and keep them comfortable…enjoy the time you have left…there is nothing more we can do”

6. No parent should ever have to listen to a song written about their child that died!

7. No parent should ever have to experience what it is like to feel guilty because your child’s scans are good but your friends child has only been given weeks to live.

8. No child should ever have to worry about wearing a mask when they are playing with friends or attending a family get together because their counts are too low and getting a common cold could kill them.

9. No child should ever have to get used to having a needle put in their chest because that is so much better than getting a “pokie” in their arm.

10. No parent should ever have to tell their child “I’m sorry that mommie can’t lay with you tonight or hug you or hold you and I can’t give you your favorite toy because we will have to throw it away if you touch it because you have just gotten alot of radiation”

Some may ask why do I need to spread awareness, my child doesn’t even have cancer…well it’s pretty simple you see neither did mine at one point! The only way we are ever going to find cures and get new treatment option is by spreading the word so more people are aware. Make a commitment to do something this month to help this cause…donate to a research hospital, hold a fundraiser and donate the proceeds, proudly wear GOLD this month…do whatever you can to make a difference.

Taylor Swift recently wrote a song and performed it on Stand Up 2 Cancer the other night…an event that was televised to help raise money for cancer research. She wrote this song about a little boy named Ronan. This little boy lost his battle at only 3 years old. He was fighting the same cancer as Bailey and was receiving treatment at the NY hospital Bailey used to go to. Taylor Swift was so moved by the blog of Ronan’s mom that she contacted her and asked if she could write a song in his memory as well as for all the other children fighting for their lives…what a selfless act of kindness by someone that could have read the blog and thought to herself how sad it was but went on about her daily life…instead she did something that would leave a lasting impression on millions to help make a difference! If you go to ITunes and download the song “Ronan” by Taylor Swift, the proceeds will go directly to childhood cancer research! (Caution: you will need kleenex) Together we can all make a difference and save lives so no child or family ever has to know the harsh reality of childhood cancer!

 

Miracles Happen Everyday!