Since April 15th, not only have the lives of my children been completely turned upside down but so have the lives of our families. The routine we once knew, is no longer. Now, I see my older babies (Derek & Dejah) LESS than a fraction of what I did, which was every single day. Now when were at Loma Linda, its once a week for only a couple hours. Its not enough for me. I feel like Im drifting apart from them. I MISS them terribly!!! Im relying on their Dad so much, FOR so much... To be both Dad & Mom to them. And he has been truly wonderful. Im relying on my family and our very close friends to stand in my place as well. I see pictures and videos of them and it feels very awkward as normally I would be the one sending those photos & videos, not receiving them. Desis cancer is robbing me of that. Desis cancer is robbing Derek & Dejah of their baby sister AND their Momma! These two have matured MUCH faster than theyve needed to and I am sooooo PROUD of them!!! I used to pick up my nephew Carson and my niece Camryn once a week from school and they REALLY looked forward to it, as did my kids. It was a guaranteed day every week that they could all be together and hang out and play for a few hours. Ive seen them only a few times and just a couple hours each time as well. I used to drive Dejah once a week to Corona for her travel basketball practice. That was JUST Momma & Dejah time for half a day. We both looked forward to it. I havent even been to one of her tournaments since March. Cancer is robbing ME of MY time with MY kids... It is NOT fair!!! The last couple days that weve been home, Ive actually left the comfort and safety of my home and went to run errands. Nothing like I used to but Im trying... I found myself REALLY, REALLY struggling with outside life... With reality... Driving down the road and in my vehicle, I know that Im living a freakin nightmare and its hard for me to see others out and about smiling and continuing to LIVE their lives... I cant force a smile. I, in NO way, wish this on any person or family. Im simply stating the difficulty of this new reality. Its hard to make small talk with people. I get emotional at the drop of a dime. Its hard for me to make eye contact with anybody, I feel like they can see right thru me, right thru my soul and see just a broken person, a shattered pile of what used to be my heart. I drove past Desis school just the other day and I felt such enormous pressure in my chest... I realized I had not been to or anywhere near her school in 6 weeks. The Learning Tree... A place Ive been to everyday since my oldest, Derek, was attending preschool in 2004. This was OUR routine. This was OUR schedule. This was OUR normalcy. Desi is being robbed of her childhood! Shes being robbed of the rest of her Pre-K weeks. Shes being robbed of her graduation. Shes being robbed of the annual Camp-Out. Shes being robbed of her classmates and friends, field trips, school functions, her teachers, her Learning Tree family and her education! We are just beginning this journey, we are two rounds into chemo, we have SUCH a long and unknown road ahead of us. I try not to think about everything too much, it becomes waaaay too overwhelming and daunting. I am grateful AND blessed with the accomplishments Desis made thus far. I am continuously in pure! Plain and simple AWE of her. Every day... She has grown up and matured so much, her understanding of this disease and her acceptance of it... BLOWS my mind! Shes constantly teaching me. I love her lessons. They make me such a better person and a better Momma. I have changed my way of life drastically. Those who know me personally, are witness to this. Although we are living day to day and thankful for EACH and EVERY day, I am not naive to the gravity of this disease. I know that Desi doesnt look sick right now but lets be realistic.... Most of these children battling for their lives look like normal everyday children in the beginning too. Im scared of how things will change when my daughter does begin to look sick. Itll be another physical reminder that this is NOT going away anytime soon. We have to face this beast up close and personal and Desi, this little 4-year old girl, is doing the HARDESTpart out of anyone of us! Relapse... Has a new meaning to me. I now fear that word almost as much as cancer. It is in relapses that these children have lost their battles. After they survive this treatment, they are STILL fighting for their lives.... NOT to relapse! It truly is never ending. And we are just in the beginning... Tonight my post is written from a state of pure panic and fear. Tonight Im telling all 6,000 of Desis friends that I need help... We NEED help. Desirae NEEDS to be at Sloan Kettering. She NEEDS to have this 11 cm x 10 cm tumor that has grown and wrapped around her aorta and any disease invading lymph nodes, resected by Dr. Michael LaQuaglia (Chief of MSKCC Division of Pediatric Surgery). He is a world-renowned expert in resecting the challenging abdominal Neuroblastomas that encase critical organs. Dr. LaQuaglia underwent sub specialty training and is able to perform a thoraco-abdominal approach. Very few other pediatric surgeons can perform the thoraco abdominal approach. Im giving you the nitty gritty of it ALL right now... I am currently battling her insurance (Anthem Blue Cross HMO). I am filing appeals and grievances to their denials and I am prepared for the next steps. If still denied, Ill be filing for an Independent Medical Review (IMR) with the California Department of Insurance (CDI). This could and probably will take months, even if I request an expedited grievance. Its a big huge insurance company and they WILL drag their feet because thats just WHAT they do. In the meantime, we CANNOT wait months. It is NOT an option of whether or not to wait for continued treatment until insurance decides to approve it and lay for it. She NEEDS to continue treatment. She NEEDS to have this huge surgery. She NEEDS to finish her chemotherapy. She NEEDS to do the radiation and she NEEDS to do the immunotherapy. I know Ive said this before in posts and I will say it again. Sloan Kettering is the ONLY hospital in the UNITED STATES that can give her the 3F8 Monoclonal Antibody therapy. The ONLY!!!! We will NOT take her to St. Judes or City of Hope because they dont turn anyone down; they DONT offer the treatment that she NEEDS. That is the bottom line. We will fight insurance. We will!!! Having this 3F8 antibody, is going to give her the BEST quality of life! Theres NO WAY around that. That is why about 4 weeks ago, we began fundraising and online donations. In that short period of time, we have raised, with ALL of YOUR help, nearly $40,000 towards our goal of $250,000. That is A M A Z I N G!!! But we have not reached our goal. We cannot stop there. We leave for New York in just a few short weeks... That is going to FLY by! We cannot go to New York without at least $100,000. We will DROWN out there in medical bills. On top of that, were physically not going to be back home to hustle. It will be incredibly difficult. I know that $250,000 is a lot of money. But I bet you that there is not ONE PERSON that would not give $250,000 to save their childs life. Heck, Ill even say half a million dollars!!! Who am I kidding? We would each give our VERY life for our child! I will sell a kidney and any other organs that I dont NEED to live, to raise more money for Desirae! We live in a community that has some deep pockets. For one reason or another, we have not grabbed their attention. This is a retirement community where many people have second homes and the most golf club communities I think anywhere else in the US! There IS money in this community. There are cities in this valley that are extremely wealthy. $50k or even $100k, wouldnt put a dent in some of these pockets! I look at it like this... If 21 people donated $10,000 each, wed have the $210,000 that we need. Or if 42 people donated $5,000 each... Or if 210 people each donated $1,000. It CAN be done! Its NOT impossible. I WILL keep fighting. I will NOT give up. I am ALL over Facebook, private messaging people, companies, corporations, foundations, you name it.... Basically begging for financial contributions. I am looking up the local successful CEOs of our valley to email them directly. Indian Wells Tennis Gardens is located in our valley. Im trying to reach out to Larry Ellison who owns IWTG and Oracle Corp (enterprise software company) and is the 3rd wealthiest man in America, per Forbes THIS year! Ellen and Oprah... We have several connections in at Ellen and they have Desis story, its just finding the right time to present to her and we are blowing up social media to get their attention that way too. This is what I do non-stop, constantly. I do NOT sleep. I stay up and research and brainstorm ideas and ways to get my daughter to Sloan Kettering. My inner circle knows this. They get my random texts, emails and messages thru out a normal persons sleep schedule. When I do fall asleep in the wee hours of the morning, its from pure exhaustion! My eyelids literally just will NOT stay open any longer. But it doesnt stop me. It WONT stop me. We have the connections! I know of Desis SIX THOUSAND friends, we CAN accomplish this goal. If you have personal contacts for me, please, PLEASE, provide me with that avenue. You can private message Desis Facebook page or my own (Laura Palada). I have 2 emails prepared and ready to go. One goes into depth and extreme detail about Desis cancer and the treatment that she needs at Sloan Kettering and our struggle getting there. The other is a condensed version asking for ANY financial contribution. I will send both to anyone who thinks they can help Desi get to New York. I can also provide you with a letter from the Pediatric Oncologist (Dr. Shakeel Modak) at Memorial Sloan Kettering Cancer Center in New York. To Desis followers, supporters, believers and angels, PLEASE donate anything you can. To the countless that HAVE donated and are continuing to donate, GOD BLESS YOU!!! Here is the information to donate: youcaring/believingfordesi OR You can go into ANY Wells Fargo and tell them you wish to make a contribution to the donation account: DESIRAE CECHIN DONATION ACCOUNT You can also mail them a check to: Wells Fargo P.O Box 3488 Portland OR 97208-3488 Attn: Desirae Cechin Donation Account
Posted on: Mon, 26 May 2014 09:14:00 +0000
Trending Topics
Recently Viewed Topics
© 2015