On February 6, 2015 the family sat down with Desi's team of doctors to go over her scan results. Mom & Dad were looking forward to finally hearing those words that Desi has worked so hard for, NED (no evidence of disease). Unfortunately, they heard the exact opposite. Desi's cancer was back with a vengeance & spread. She had as much cancer as she did at diagnosis, minus her tumor.
Desi was immediately admitted into the hospital. She started a round of ICE chemo and has finished that.
She is due for another round of ICE chemo & scans to see if the chemo is attacking the cancer.
Please continue to hold Desi in the light. This is the first time doctors have mentioned not being able to do anything. As you can imagine the family is heart broken over this news.
Thank you for your continued support.
A lot has been going on the last couple days. Yesterday was deflating. There has been a roadblock in Desi's treatment and we are now looking at a new plan of action to get back on track. I will get into that later once we have all the information from her team in NY. But for now, Desi has to have her tooth extracted. We found out on Tuesday at her dental cleaning that she has an infection and any ...infection in her body is bad news so it has to come out immediately.
Please also pray for guidance in all these future decisions that are in the works for her treatment.
Please follow her updates at www.facebook.com/believingfordesi
You will find the most up to date info on treatment & how Desi is doing there.
Thank you for your continued support, love & prayers.
Desi made John Chapples's blog!
Desi is one week into her 3rd treatment and has felt the effects of this round more than ever. She is unable to hold any food down and has been on 'round the clock anti-nausea meds. Please keep her in your prayers, she has one more round of the same chemo in two weeks, then round 5 will be different chemo's again.
Desi is still very sick from the side effects of her 3rd round of chemotherapy. Please continue to pray for her. She is a tough cookie, but she is really feeling this round.
All of us at #teamdesi would like to personally thank everyone that's helped us so far. It goes to show you that every little bit helps. People have donated amounts ranging from $5 to $2,500 and we appreciate every single cent. Our goal is $300,000 for her specialized treatment in New York and we're nearly 1/2 way there!! NONE of this would be possible without YOU!! Thank you, from the bottom of our hearts. Please continue to share Desi's story and her funding site.
We are at $117,000 to date between the Wells Fargo account (used for checks and money collected from fundraisers), and this you caring account- so exciting!!! Please reference the photo that I uploaded of a bar graph :) - See more at: http://www.youcaring.com/medical-fundraiser/believing-for-desi/177969#sthash.7dY9i2EW.dpuf
For those of you who prefer to send a check, or walk one into the bank:
You can go into any Wells Fargo and make a contribution to DESIRAE CECHIN DONATION ACCOUNT.
You can also mail them a check to:
P.O Box 3488
Portland OR 97208-3488
Attn: Desirae Cechin Donation Account
I wanted to address a concern that was just brought to my attention. A few people have asked, "What happens to the money if we don't raise the entire amount?"
1. We will raise the entire amount- there is no other option.
2. If we do not raise all $300,000, Desi's parents will still send her to MSKCC and give up their home and any other thing that they have to, in order to pay for her medical treatment.
3. MSKCC is her only chance at LONG-TERM survival, that being said she will get there no matter what.
Thank you for your concerns, please feel free to reach out to me at anytime, if I do not pick-up my phone- please leave a message and I will call you back.
Hi everyone! Desi is currently on day 2, of chemo number 3. She has been admininstered Cisplatin & Etoposide and has had extreme nausea and has been very sick. Her parents opted for a small dose of steriods to curb some of the nausea and have been using a few natural products as well (peppermint & orange oil & sea bands).
Please keep her in your prayers as she gets through this 3rd (very tough round).
Desi made it into the local newspaper here in the Coachella Valley today, here is the link for further reading!
If you like 31 bags- you can order through the web address below! Online fundraiser for Desi- another way to give :)
Desi made it on to my college friends PR blog: Plan B PR! She lives in Dallas, TX- you can view it here:
Good morning #TeamDesi- I added 3 video's of Desi so that you guys can see her personality, you can find them under the "Photo's & Video's tab.
Good morning #TeamDesi- I added 3 video's of Desi so that you guys can see her personality, you can find them under the "Photo's & Video's tab.
Desi has now been featured in Boston & Florida!!! GO DESI GO!
Thank you to everyone that has donated to Desi- The family and I are completely blown away by the generousity that we have witnessed!
A special thank you to New York! #TeamDesi feels the love from the big apple- you guys are utterly fantastic!!!
Thank you for all of the special notes, messages and calls- They have all been read or heard and most responded to! If you did not hear from me, I will be in touch tomorrow!
Here are the latest online news articles that Desi was featured in today!
New York Daily News:http://m.nydailynews.com/life-style/health/family-tot-rare-cancer-internet-plea-article-1.1813648
The Huffington Post: http://www.huffingtonpost.com/2014/06/02/desirae-cechin_n_5434027.html?utm_hp_ref=healthy-living&ir=Healthy+Living
Thank you again,
This page is managed by myself, Stephanie Roose- I am a friend of the family and Desi's Guardian Angel :) If you would like to reach out to me my number is 760-485-3955 & my email is email@example.com.
Desi's mother is, Laura Palada and I share updates from her on this page as well.
Thank you! - See more at: http://www.youcaring.com/medical-fundraiser/believing-for-desi/177969#sthash.5EDoDFs0.dpuf
Please follow Desi's detailed story on Facebook: Believing for Desi
Desi was diagnosed on April 16th, 2014 with Stage IV High-Risk Neuroblastoma. She has been undergoing chemo treatments at Loma Linda University Children's Hospital and is currently a week away from treatment #3.
Desi's family would like for her to be seen at Memorial Sloan Kettering Cancer Center (MSKCC) in New York. They specialize in Neuroblastoma and have a higher percentage rate of survival with Neuroblstoma than any other hospital in the US.
They also have a resection surgeon there who performs 2-3 surgeries a week. He has a signature way of being able to remove 100% of the tumor.
The hospital is also the ONLY hospital in the US that uses the 3F8 Monoclonal Antibody (MAB). This MAB uses a radioacitve isotope to guide the medicine to the protein on the outside of the cancer cell, latches on and then communicates to the cancer cell that it is "OK" to accept the chemo and then the cell dies.
Cancer cells are very intelligent and 3F8 has found a way to out smart them!
Why don't her parents just take her there? Good question! They can't! Desi's insurance does not cover her going to to MSKCC, they only cover her at hospitals that are part of the Children's Oncolog Group (COG).
But, COG has a MAB too Ch.14-18... why not just use that? Ch.14-18 does not have the radioactive isotope and has been proven to be not as effective as 3F8.
This is the reason why we are aggressivley fundraising for Desi, she MUST get to MSKCC. There IS no other option. In order to give her the best odds at survival she must make it there!
To date with all of the fundraisers, her WF checking account & this site we are at about $40,000. We have a long way to go, but that doesn't mean it cannot be done!
Did you know that just by you sharing this site you are helping? YES! Share, Share & Share more; the beauty of social media is that it spreads and grows!
Also, donate! It is in our DNA to share, help and support others. Skip your morining coffee, or make a contribution to Desi- you will feel fulfilled by helping!
Did you know that if we had 6,000 people donate $50, we would make our goal!
So donate, help get this little girl to MSKCC!
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 we're at Loma Linda, it's once a week for only a couple hours. It's not enough for me. I feel like I'm drifting apart from them. I MISS them terribly!!!
I'm relying on their Dad so much, FOR so much... To be both Dad & Mom to them. And he has been truly wonderful. I'm 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.
Desi's cancer is robbing me of that. Desi's cancer is robbing Derek & Dejah of their baby sister AND their Momma! These two have matured MUCH faster than they've 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.
I've 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 haven't 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 we've been home, I've actually left the comfort and safety of my home and went to run errands. Nothing like I used to but I'm trying...
I found myself REALLY, REALLY struggling with outside life... With reality... Driving down the road and in my vehicle, I know that I'm living a freakin nightmare and it's hard for me to see others out and about smiling and continuing to LIVE their lives... I can't force a smile.
I, in NO way, wish this on any person or family. I'm simply stating the difficulty of this new reality.
It's hard to make small talk with people. I get emotional at the drop of a dime. It's 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 Desi's 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 I've 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! She's being robbed of the rest of her Pre-K weeks. She's being robbed of her graduation. She's being robbed of the annual Camp-Out. She's 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 Desi's 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!
She's 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 doesn't "look" sick right now but let's be realistic.... Most of these children battling for their lives look like normal everyday children in the beginning too.
I'm scared of how things will change when my daughter does begin to look sick. It'll 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 I'm telling all 6,000 of Desi's 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.
I'm 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, I'll 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. It's a big huge insurance company and they WILL drag their feet because that's 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 I've 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. Jude's or City of Hope because they don't turn anyone down; they DON'T 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! There's 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, we're 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 child's life. Heck, I'll 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 don't 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, wouldn't put a dent in some of these pockets!
I look at it like this... If 21 people donated $10,000 each, we'd 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! It's 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 CEO's of our valley to email them directly.
Indian Wells Tennis Gardens is located in our valley. I'm 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 Desi's story, it's 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, it's from pure exhaustion! My eyelids literally just will NOT stay open any longer. But it doesn't stop me. It WON'T stop me.
We have the connections!
I know of Desi's 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 Desi's Facebook page or my own (Laura Palada).
I have 2 emails prepared and ready to go. One goes into depth and extreme detail about Desi's 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 Desi's followers, supporters, believers and angels, PLEASE donate anything you can. To the countless that HAVE donated and are continuing to donate, GOD BLESS YOU!!!
Desi will be going in for treatment 3/6 on June 6th. She is doing well and is very happy as always.
Thank you for your continued support- Team Desi :)