Sorry i havent posted a blog since christmas but our lives have been crazy.Between Audrianna's treatments and mommy going back to work and trying to balance everything there just isnt time for the computer right now. Audrianna is doing ok with her chemo, she has good days and bad but we are hanging in there and trying to stay positive.Right now we are battling a few things like severe back pain that they cannot seem to find a reason for and we are hoping its chemo related and 2 nodules on her lung that the doctors are *watching closely* and hoping that on her MIBG and CT Scans in March they have not grown otherwise she will have to undergo a biopsy of the lung to make sure they aren't cancerous. Audrianna has been having a rough time with the Temedor because she cant swallow caplets and it has gotten so bad she has asked for an NG Tube to be placed twice now so she didnt have to taste the medicine and it doesnt make her want to throw up as bad as if she takes it by mouth.I am very stressed everytime they have to put the new tube in because i hate to see her cry although she did very well this time and only cried for a few minutes it still breaks my heart.Thankfully we have alot of friends and cancer family that are helping us through the stress and helping mommy not to have a nervous breakdown during *HELL WEEK* as i have dubbed her chemo week. Every 3 weeks i have to watch her go through hell, sometimes the hell isnt as bad as others and sometimes its worse...but its always HELL probably more for me then for her because i feel every little bit of pain she feels and i feel it twice over because im her mom.
But everyday i am also thankfull that it isnt worse and she is ALIVE. We have seen so many kids here that have the same disease or other horrible diseases and they have either died or lost body parts to this horrible thing the American cancer Society calls a RARE CANCER...Pediatric Cancer is not RARE and we need more people out there shouting that at the top of there lungs so that kids like Audrianna,Tiara,Wyatt,Bailey,Ryan,Hannah can survive and not become Angel's like so many of there friends:(
Please keep all the babies out there fighting cancer in your prayers and pray for a cure to be found! I will update again as soon as i can and we hope everyone has a Happy Valentines Day!
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There's over 200 types of cancer--12 of which are almost exclusively found in kids, teens, and young adults. If fewer than 200,000 people in the US are affected by a disease, it's considered rare. There's over 7,000 rare diseases, so it's hard to research them all. Most money and attention go towards the deadliest diseases (which is now AIDS since almost 2 million people around the world die every year from it.) :-(
ReplyDeleteSome pediatric cancers only affect 200 kids/teens a year, so compared to other diseases (like AIDS) it's considered rare. That's just how the system works.
That doesn't mean all hope is lost--private donations to good research can help create more cures.
I myself have a rare disease and it gets even less publicity than rare cancers; even worse, there are absolutely no treatments. Not even a crappy treatment like chemo. I've been working to create more awareness for it. It's up to people like you, Audriana, and all the other people affected by these diseases to do something about it. We may be rare compared to other diseases, but it doesn't mean all hope is lost.
All the best! <3