Brain Tumor Awareness Month

First: We could use your prayers today. Ivee has to have her subcutaneous port flushed every four weeks. This has been the case for almost 6 years. It was easy to access her when she was a baby, but know...it is getting harder, and harder! She is scared, she says it hurts and momma just can't watch it much longer. We manage to get the needle in yesterday, but could not get blood return. So we will have to try again today. Please, pray that this can happen, and that Ivee (and momma) will be okay. (The picture below is not of Ivee, but this is the same process that we have to do every month) It is a large gag needle, and quite intimidating. We are possibly looking at having the port surgically removed this Summer. It makes accessing her easier, but since we are going to 6 month scans, I just can't justify having home health access her 10 out of 12 months for nothing. This would mean, however, a needle stick and finding a vein every 6 months in Memphis, which, with Ivee's cubbiness and veins, might prove difficult. Hard decisions to me made here. Just need prayers to get through this afternoons stick! 

Second: I don't really like to blog everyday. I have an ADD/OCD mind and I am very distracted by some many things I NEED to do. But, this month I want to honor and remember some very brave and inspiring people. I am going to attempt, EVERYDAY, to honor or remember someone who has battled, still battling or has lost their life to a brain tumor. I want to remember how they have touched my life. I missed May 1, so today I will share two heros. 

May is Brain Tumor Awareness Month

In Memory of 

Johnny Sileno

July 3, 2004 - July 4, 2010

In 2007 - Johnny was the first Ependymoma Brain Tumor patient that Ivee and I ever met, and Ivee will never remember him, but I will NEVER forget him or his parents. I remember coming to St. Jude for the first time and seeing this bright eyed little boy being admired and just fawned over by his daddy, John in the RO waiting room. Johnny had just had his second brain tumor removed, and was there to begin his second round of radiation. We lived together breifly at the RMH in Memphis as we began radiation treatment and he was finishing his rounds. I got the nerve to speak up one day when I heard his mother, Jennine speaking to someone else about Johnny's ependymoma. I remember feeling like my heart would burst when I heard that someone else in the room with me had the same aggressive cancer my daughter had...and at that moment...I didn't feel so alone. I followed Johnny's journey through emails and internet as he continued to battle his third and fourth/and final tumor. I was encouraged by his parents faith and fight and their undying love for their baby. They created a foundation in Johnny's name to help give financial support to families battling childhood cancer that need help with monetary things. They have not stopped, and continue to fight the war on childhood cancer. You can give your support to Johnny's foundation and hear their story at

http://www.thejohnnysilenowishesforwellness.com/

In Honor of 

Matilda Campbell Reidhead

In the summer of 2009, I happened upon a family who had just discovered that their third and youngest child was battling for her life with ependymoma. I reached out to them, knowing what it was like not knowing anyone in the "ependy" world and feeling very alone. They two months before diagnosis, like us, had been exploring if their child had a food allergy or breathing/asthma issues. They knew something was wrong, but never in a million years though a brain tumor was the issue. A sudden on set of hydrocephalus had Matilda admitted and a CT scan performed. A few days later at 15 months old, she underwent surgery and had a successful, almost gross total resection of the tumor.  Matilda endured four months of hard chemo, 6 blood transfusions, shunt placement, and 26 rounds of proton beam radiation, ending treatment in the Spring of 2010. She endured a shunt revision in November of 2010, but she continues to receive great reports, clear and stable MRI scans and is flourishing. Love to Matilda the Amazing, and adorable!!