At the Risk...

Cailyn loved Zebras. This is Lucy the Zebra, who Cailyn made friends with this summer. Her owner brought her to M.D. Anderson a few days ago to visit Cailyn. 

She passed away early this morning. I appreciate all the prayers, and help raising money for treatment, the cards, and support from my Tumblr family. Please continue to pray for my family. 

attherisk:

Keep Cailyn in your prayers; our family hasn’t given up, but the doctors seem to be well on their way to giving up. Yes, we understand this is a ‘fatal-upon-diagnosis’ cancer, but we will never stop fighting for her! Cailyn will be returning home to Florida on November 17th. Since we are unsure of what the future holds for her, she will be celebrating Christmas shortly after her arrival home. Any cards or letters of support to her would be greatly appreciated. Message me if you’d like to send her one.

Edit: Just received word that Caitlin Downing, a 5 year old girl diagnosed about 3 months before my niece, lost her fight with DIPG on 11-10-12. Please keep her family in prayer as well. 

I am BEGGING anyone with any ideas or knowledge of alternative treatments to contact me.  This is the 2nd DIPG related death I’ve learned of just this week. We will try anything at this point. HELP.

Keep Cailyn in your prayers; our family hasn’t given up, but the doctors seem to be well on their way to giving up. Yes, we understand this is a ‘fatal-upon-diagnosis’ cancer, but we will never stop fighting for her! Cailyn will be returning home to Florida on November 17th. Since we are unsure of what the future holds for her, she will be celebrating Christmas shortly after her arrival home. Any cards or letters of support to her would be greatly appreciated. Message me if you’d like to send her one.

Edit: Just received word that Caitlin Downing, a 5 year old girl diagnosed about 3 months before my niece, lost her fight with DIPG on 11-10-12. Please keep her family in prayer as well. 

I am BEGGING anyone with any ideas or knowledge of alternative treatments to contact me.  This is the 2nd DIPG related death I’ve learned of just this week. We will try anything at this point. HELP.

passionate-purple-pineapple:

Childhood cancer awareness

Did you know that childhood cancer isn’t that rare? And that rate is rising.

46/7- Forty six kids are diagnosed with cancer every weekday and seven of them die everyday.

Pediatric cancer is vastly underfunded, all 12 MAJOR types of childhood cancer receive less funding for research then breast cancer and prostate cancer alone.

DIPG has a survival rate of zero, so if your child, little sibling, niece, nephew, etc gets diagnosed they will die. The average survival time is just precious months- a year if they are lucky, if they can get radiation (some are too young for it).

Update on Cailyn:

Our sweet girl is currently at M.D. Anderson Cancer Center in Houston facing surgery to have a shunt inserted to relieve swelling of her brain. Our family needs your prayers and thoughts now more than ever. Only 30% of DIPG patients make it 9 months after diagnosis, and Cailyn was diagnosed in March. She has gone through radiation and chemo (which DIPG is resistant to) and treatment has so far been unsuccessful. 

I’m struggling with understanding why and how this happens to 4 year old. BUT I’M NOT GIVING UP YET. I’ve seen more than one miracle in my life and I’m asking you all to join me in asking whatever G-d you believe in for one more for my precious niece. 

attherisk:

I don’t know about you, but this looks like a little girl that can kick cancer’s ass!

Update on Cailyn! Her MRI results came back today- her tumors are stable and seem to be decreasing…onward with another round of chemo. Thank you all for your prayers and thoughts. 

I don’t know about you, but this looks like a little girl that can kick cancer’s ass!

Update on Cailyn:

Our sweet little one will be getting an MRI on October 17th, after this round of chemo completes. (Today is her last treatment.) 

Please keep my niece and our family in your prayers, as this really was our last option. 

Cailyn is still having trouble with her motor functions, like walking, and talking, but not as bad as it was a few weeks ago.  If you want to get more frequent updates on the little lady you can do so here. Thank you for all your prayers. If anyone would like to send cards and well wishes to Cailyn, please message me and I will let you know how to get those to her. 

For those of you who would like to leave personal words of encouragement, or follow Cailyn’s journey, you may do so here. Thank you again for all the support from the Tumblr community. 

attherisk:

For those of you who have been praying for my niece Cailyn, I want to thank you. 

She was unable to get into the clinical trial in New York this summer, but after one round of radiation her tumors shrank by 60%. 

Unfortunately it was discovered this week that they are growing back, and more aggressively than ever; they are growing along the brain stem, so again, it can’t be operated on. 

My brother and his wife will be having hospice come into the house next week. I ask that you continue to pray for my family in this rough time.

I’m still holding out for a miracle from Hashem, the creator of life.   

I would like to organize a tumblr vigil for Sunday night at 8pm CST for those interested so we can show Cailyn that she is still close to our hearts. Contact me if you’d like to participate. 

I’m not ready to let DIPG win just yet, fuck the odds and fuck the numbers.  

Tonight at 8p CST I’d like to ask my tumblr friends to take a moment to send some good energy, prayers, or thoughts out into the atmosphere for my sweet 4 year old niece. I’m not ready to believe that this is all there is for her, and I am asking you all to reblog this post with a special note for Cailyn. I’ll be sending them her way tomorrow. 

For those of you who have been praying for my niece Cailyn, I want to thank you. 

She was unable to get into the clinical trial in New York this summer, but after one round of radiation her tumors shrank by 60%. 

Unfortunately it was discovered this week that they are growing back, and more aggressively than ever; they are growing along the brain stem, so again, it can’t be operated on. 

My brother and his wife will be having hospice come into the house next week. I ask that you continue to pray for my family in this rough time.

I’m still holding out for a miracle from Hashem, the creator of life.   

I would like to organize a tumblr vigil for Sunday night at 8pm CST for those interested so we can show Cailyn that she is still close to our hearts. Contact me if you’d like to participate. 

I’m not ready to let DIPG win just yet, fuck the odds and fuck the numbers.  

attherisk:

This is my niece Cailyn, she’s three years old and was recently diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) . This is a very rare form of tumor diagnosed in only 200 children a year in the united states. The tumor is sitting on her brain stem and is inoperable. She just finished her first round of radiation, but other wise there is not much else the doctors can do. UNLESS she gets to take part in an experimental treatment in NY. My brother is in the Navy, and their insurance will not cover the cost. 

I am asking that my followers help me out with a signal boost for Cailyn, whether it be for prayers or donating to her fund to help her recieve treatment. The average length of survival with this type of cancer is 9 months, with about 30% making it a year, and less than 10% making it 2 years. 

You can donate to her fund by following this link, where you can also read more about her illness: Cailyn’s Pediatric Brain Tumor Foundation