Today marks the last day of September, and the last day of Childhood Cancer Awareness Month. However, for my family, each and every day of the year is a painful reminder of the lasting effects Childhood cancer has on families. Did you know cancer is the NUMBER one cause of death in children? I didnt. Did you know that out of the MILLIONS of dollars raised for cancer research, a paltry 4% (yes, FOUR PERCENT) is given to childhood cancerS - plural. Look at this way ... 100 million raised = Childhood cancer receives 4 million. Sounds like a lot right? WRONG! In fact, the amount donated is so low, there are very few advancements in ALL TYPES of cancer and in DIPG research, there has not been any SIGNIFICANT advancements in THIRTY YEARS. When we were given Christians diagnosis, the only thing his Neurologist could tell us was he was going to die, and its just bad luck that he was afflicted with this RARE form of brain cancer. The sad thing is he didnt say it callously, he really doesnt know. A few weeks ago, my 11 year old son Jalen walked past Christians 1st grade class (he only completed 3 months of 1st grade), came home and broke down crying. He misses Christian so much .. that was his best friend. He loved being a big brother. Most days, I cry at least twice. I have so much anxiety about keeping my other 2 childrens lives normal .. keeping my family together, period. Ive developed chronic headache/migraines. Sometimes getting out of bed is a chore all in itself. Yet, there is something so humbling about watching your child fight cancer. How can you wallow in self pity when you watched your 6/7 year old son lay flat on a hard table, his head held in place by a plastic mask clamped to the table, multiple velcro belts around him? He would endure this anywhere from 10-15 minutes, 5 days a week. For 2 1/2 months, we lived in San Francisco so he could receive his treatment, which included an experimental drug called Virinostat. Most days he slept a lot, on some days he had bad headaches, some days he kept absolutely NOTHING down. I will never forget one day, we were about 2 weeks into treatment, he finally had an appetite and ate pretty good the majority of the day. Later into the evening, he threw up every little thing he had been able to eaten all day. He looked at me and asked, Why does this keep happening to me?. Ive never been more broken in my entire life. Here is my baby, who Ive loved and protected for 7 years. Ive kissed boo boos away, calmed fears down .. and I was completely helpless to do anything about THIS. DIPG is a cruel way to die. It is located on the PONS area in the brain, which is basically the area where every single function your brain controls meets. Due to the location, and the rapid growth of a tumor that infiltrates healthy cells, its inoperable. We watched Christian die slowly. He lost his sense of balance, so he had a hard time walking. Eventually, he was bound to his wheelchair. Within the last two months of his life, he lost his ability to speak, hold himself up and finally, lost his ability to breathe. How can DIPG possibly be more cruel than that? How about knowing Christian was literally trapped in his body? His brain function never changed because the location of the tumor did not interfere with cognition, his mind was sharp as ever. I remember the first time I read that .. I cried myself to sleep. He gained so much weight from the steroids, every inch of his skin was stretched to the limit. Some areas developed angry, red stretch marks and some actually split. He was completely unrecognizable at the time he died. Once in the circle of the support group, you begin to watch other childrens journey and become attached. These other parents understand the deep, wounding pain experienced. Yet, as each child passed, my heart reverted back to the day we lost Christian every time. I cried my eyes out because the pain is so raw at this time. So many times I questioned God .. I just didnt understand. I wondered if He could fix us, to be perfectly frank, at times I doubted we could make it through this. I screamed to God that I was sorry for any and everything Id ever done, just please dont punish my son. Yet deep down, I knew He wasnt and would not ever do that. Those who got to know Christian, those who had the pleasure of watching him through his journey ... The spirit of the Lord shone through Kiss. The Lord used him in such a mighty way, in so many different lives. No one can tell me God doesnt exist because I saw Him in my baby. We need to step up. Why arent we fighting for our children? We need to be their voice. Be aware ALL YEAR!!!! I understand some people are afraid of even acknowledging an illness in fear they might bring it upon yourself. I know I was. If you dont see or say it, it doesnt exist. Not the case ... Please remember that cancer does not discriminate - not wealth, not status ... NOTHING!!!! Who will stand in the gap if we dont? Keep it GOLDEN!!! See you soon bubby!
Posted on: Wed, 01 Oct 2014 07:41:59 +0000
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