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Help Nick Stay in Remission Safely

$39,636 of $50,000 goal

Raised by 648 people in 10 months
Created September 10, 2018

32829606_1536624526777547_r.jpegHelp Keep Nick in Remission with Non-Toxic Preventative Therapies


Nick is a bright, kind-hearted Junior Black Belt who loves music and art. He is also a boy scout and enjoys hiking and camping.  After a long year of hard work in school, all he could think about was spending the summer with his friends.

School ended on a Friday and just 3 days later, we ended up in the Huntington ER.  Nick was transferred that night to Cohen Children's. On June 30, in a meeting with a group of doctors and staff, Dr. Julie Krystal told us he had AML (Acute Myeloid Leukemia).  She said he had 90% leukemia blasts in his bone marrow. I challenged her on the diagnosis because test results seemed to show a different type of leukemia.  When I asked for a pathology report,  she toldme it wasn't available.  I asked for a second opinion, explaining I thought they were making a mistake and why. 
 
She said I could pursue a second opinion, but they would not delay treatment.  She also told me very clearly if I didn't sign consents immediately, she would call CPS, have me removed and give Nick the treatment anyway. Dr. Krystal stated the treatment for the first month would be the same regardless of the type of leukemia he had. This turned out to be false information. 
 
He began treatment for AML on June 30th.   Four days later, already into the wrong treatment protocol, I was provided a copy of the final pathology report which showed he had a very rare form of leukemia called MPAL.

Overnight, our whole world was turned upside down. Being a single mom, not having family nearby, has been pretty hard in not having consistent support (and sometimes none at all). After Nick was admitted to Cohen, I literally lived in the hospital with him, barely leaving his side.

Cohen Children's continued the AML treatment, even though it was not the standard of care for the type of cancer he had.  Nick had adverse reactions to several of the drugs and developed a life threatening bacterial infection and organ damage to boot. The chemotherapy was super intense and he lost over 20% of his body weight. It’s a miracle he survived.

After 30 days of not being able to eat, almost dying, and having severe adverse reactions to drugs, Dr. Krystal told us all signs pointed to him being in remission and he could go home.  She explained they would monitor him outpatient until his blood counts recovered and they could do a test called an MRD.   A Minimum Residual Disease test tells them the tiniest amount of cancer he might have, down to .01 cancer cells.  I met with the head of the department, Dr. Lipton and explained we would finish outpatient care, but would not be returning to Cohen for future inpatient treatments. I told him I would be pursuing second opinions at local hospitals, as well as around the country to determine where I wanted Nick transferred and would not tolerate a repeat of what transpired at the beginning where he was forced into improper treatment. He stated he understood and promised to give us time to transfer Nick's care after the bone marrow results came in.

Once Nick was discharged, we got straight to work on boosting his immune system with lots of organic fresh juices (70 oz daily), salads, and fresh fruits and veggies, along with alternative protocols and therapies. He began to look and feel much better.

I took him to other facilities in the area for second opinions, because there was no way I was allowing Cohen to do further in-patient treatment under any circumstance. They misdiagnosed him, gave him wrong treatment, threatened to take him away from the very beginning and messed up a procedure, among other things.  Dr. Wolfe, one of the heads of the department, at one point during the admission told me it was a courtesy they were providing any medical information to me about my child.  It was a terrible experience from start to finish.

On August 24, 2018 they performed a bone marrow aspirate for the MRD test they told us about.  We attended an outpatient appointment on August 29, 2018 where they reviewed the MRD results.  His treatment was "a complete induction failure" according to Cohen.  They told us his bone marrow was packed with 90% leukemia cells and peripheral blood had 57% leukemia blasts. We reminded them we were going somewhere else.

They called the police and CPS and told them Nick was dying. They stated he was in imminent danger, that his white blood count would continue to rapidly rise and as a result, Nick could die at any moment. They told CPS I was "refusing all medical treatment".

Here's what actually happened.  The facilities I had seen and spoken to in August  refused to take him when I followed up with them after the bone marrow results, stating they had spoken with Cohen staff and it was better if we stayed where we were. In the meantime, his white blood counts stabilized and his leukemia blasts in his blood reduced from 57% to 25%. 

Hmmmmm, so let's review....... Wrong diagnosis. Wrong treatment. Mistakes on procedures. Mistake on remission.  Mistake on prediction that his blood counts would rise rapidly.

CPS chose to use the doctor's allegations and ignore the documentation I provided them of what was actually happening.

According to CPS case files and interviews with staff, Suffolk County Commissioner John O'Neill made the decision to remove Nick without a court order on September 2, 2018, at 3:30 am.  Officers from Suffolk and Nassau counties, as well as a detective from Queens accompanied CPS workers and an ambulance.  CPS caseworkers told me they just needed to have him "checked out", but what they actually did was transport him to Huntington hospital, where he sat for almost 7 hours completely unattended or examined. I was shocked, especially when I was told he was dying.  

CPS emergency workers requested the ER doctors draw blood and do an exam and the head of the ER denied the request, stating Cohen had instructed him to not touch Nicholas. He was then forced back into Cohen, to be at the mercy of the doctors who already harmed him and committed malpractice.  I  begged CPS starting August 29, right up 'til the day they took him not to bring him back to Cohen. I pleaded with them to take him anywhere in the world but there because they had made so many mistakes on him and because Nick was afraid of them.

Once back at Cohen, I was escorted down by the head of security to a mandated meeting with heads of varying departments, where I was told I would be removed by police basically if I did anything at all they didn't like.  They explained they were under no obligation to provide me information about my child's medical care and not to ask. They posted 2 guards outside my son's room and at least one guard would follow him every time he walked the unit. He was a prisoner.  Nick was terrified.

CPS caseworkers promised me nothing would be done to my child until after court on September 5, 2018.  Late in the day September 3, 2018,  Dr. Krystal spoke with CPS and informed them Nick was in stable condition.  Later that day, after seeing his leukemia had reduced without additional chemotherapy,  CPS  was contacted and told if Nick wasn't given chemo immediately, he would die.

All consents for whatever Cohen wanted were faxed over and signed by CPS director Mark Clavin. Not one word was ever discussed with me. I left multiple messages for Mr. Clavin, but to date he has not ever returned a phone call.  Dr. Krystal walked in on September 4, 2018 and announced to Nick that she was putting a port in his body. He locked himself in the bathroom for about an hour.  He told her she couldn't do anything to him he didn't want her to.  She explained she could, even if by force and  he told her she was too small to force him. She told him "that's what security is for".  Dr. Krystal told Nick she "didn't want to have to drag him out and use force on him.....doesn't want to have to sedate him".  It was utterly disgusting. The surgery was completed and chemotherapy was done immediately. 

I tried for days to get Nick transferred anywhere.  Cohen blocked my attempts.  Finally, I was able to get Winthrop hospital to take him.  He was set to be transferred on September 11, 2018.  Doctors at Cohen tried to perform a procedure (lumbar puncture) and give him chemo right before they put him on the ambulance. I had a terrible feeling they would kill him. 

Fortunately,  I was able to get CPS to rescind their consent for the lumbar puncture, but it wasn't easy. When we arrived at Winthrop, blood work was drawn.  It was determined the procedure was not safe because of chemo he had been given the week prior which messed up his coagulation factors. Winthrop doctors explained he would likely bleed out if the procedure was done at that time.  Nick was given a plasma transfusion and two whole days passed before the procedure could be safely performed.   

During all of this,  CPS was breathing down my neck. They had custody of Nick and were challenging me on where I was living.  I had to make numerous court appearances,  find housing even though I wasn't sure what was happening with Nicholas, and deal with CPS meetings and phone calls.  Finally, at the last court date on October 9, 2018, Judge Whelan signed an order upon the agreement of all parties involved that we could move anywhere with Nick and treat him with doctors of our choosing.

At the same time, Nick finished out the chemotherapy protocol and doctors at Winthrop told us the MRD test was negative for any sign of cancer; that he was in remission.  They told us he needed three more years of chemo in order "to make sure the cancer didn't come back". Basically, they explained they were using it as a preventative now that the cancer was gone.  At that point, I chose to take him for non toxic preventive therapies I had researched with doctors from around the world.  These treatments are being used successfully on patients all over the world.  So we made the move to Florida to get Nick well and secured housing. Upon arrival, I took him immediately to one of a team of medical doctors I had set up who were overseeing his care.

Within five days,  CPS told us they didn't like the order they had agreed to and filed an emergency removal petition stating Nick was in imminent danger.  Dr. Weinblatt from Winthrop told the judge that Nick would die if he didn't get chemotherapy; that every day away from chemo was one step closer to his death.  Basically same story as Cohen. Very dramatic claims with no actual proof.  They had no interest in even looking at what we were pursuing, just like they didn't want to look at Nick's blood work when it was getting better without additional chemo. 

One might think doctors would stop and say "Wait what's going on here? This isn't typical. We need to look into     what is going on here."  They said "It's chemo or nothing."  They don't want to see what's right in front of them and evaluate. This, because that's all they know and it's the only tool in  their toolbox.  I get it. They go by these "protocols" regardless of what else is happening to the patient; even when children are clearly dying or experiencing severe adverse reactions to the drugs or damage to their little bodies, they forge on.  When autopsied, children who die during treatment show no signs of cancer. 

Fortunately, I am not as limited as they have to be. I can research and speak with doctors worldwide for treatments without limitation and this is what I have done. The information available is astounding.  It has taught me that chemotherapy is an outdated treatment which is highly unsuccessful.........something I don't want for Nick when he is in remission. Dr. Weinblatt testified that he had treated roughly 12-15 patients with Nick's type of cancer over his 40 year career. When asked how many lived, he said about 35%. He testified to the fact the industry does not have a tested proven protocol for this diagnosis. They are using a treatment for a different type of cancer on Nick-he is basically an experiment! and there is NO PROOF he even has cancer in his body. NONE.  ALL tests performed show CANCER FREE! Many of the drugs they are giving him are not approved by the FDA for use on children or for his diagnosis.

Please help me save Nick from being forced into toxic treatment which is highly detrimental and unsuccessful.  Save his life by helping us get him non-toxic preventative therapies which are working for patients all over the world!
 
We are currently in a serious court battle with CPS, who has ignored and discarded all information given by me to them about the doctors and the treatment and told me I will never be allowed to take him to doctors of my choice, because they think he should be getting chemo and their opinion is the only one going to count. I thought that was a very interesting perspective coming from an agency whose obligation is supposed to be the "BEST INTERESTS of the CHILD". Why would they not want to even look at the information? HMMMMM......

I want to thank you in advance for any generosity you can spare for this cause. No amount is too small.  The money will go to attorneys, non toxic preventative therapies, high quality foods, related medical expenses or whatever Nick needs to thrive, including housing and living expenses.

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I woke up at 2:30am and haven't been able to go back to sleep, which happens many nights and usually I end up doing legal research. Sometimes I wake up in a panic, thinking Nick is being taken again and it’s awful.

I wanted to take a moment to thank everyone who is listening, supporting, praying. It has gotten us this far and we are truly grateful to everyone. We couldn’t have done it without all of you!

Today I have court ….again! I am sure the Judge will want to set trial dates, which will probably extend into September, etc.

We have been so displaced for so long, it seems as though it will never be over. Nick is upset about leaving his friends and the only life he has ever known but we have no choice. If he has to leave, Nick says he simply wants to settle into a home where he has his own bedroom and his belongings with him. He wants to be able to go to camp. He wants to be able to be free of the CPS supervision he is currently living under. He wants to be able to go swimming and look forward to the year ahead. He wants to ride his bike and play with other kids.

Nick continues to stay in remission with doctors who specialize in keeping patients in remission after a cancer diagnosis. We are now officially over the six month mark of staying in remission with no chemo!
He still struggles with some memory issues, but it has been greatly improved with Brain Core sessions.

After several months of detox regimens, getting him help for the chemo brain and peripheral neuropathy, we are focusing mostly on preventative strategies in order to keep him in remission. He still has a ways to go to heal from the damage chemo did and we all know, there are long term side effects (you can see this on cancer.net under long term side effects children search). As many people know, when you have a cancer diagnosis, there is no guarantee anything, including chemo, will keep you in remission the rest of your life.

Did you know a minimum of 1 out of 4 kids relapse after 3.5 years of chemo treatment? Sadly, many of these children are not able to be put back into remission and don’t make it. Nick knows this and wanted to be able to feel good during the process, instead of being sick from chemo for 3.5 years and potentially having the treatment take his life. We know that when you destroy the immune system, you take away the very thing God placed in your body to protect you.

So far, Nick is doing well, thank you God. I know every step in this process, regardless of how bad, has been God’s will. There is a reason he picked us to fight this battle. I try hard to do my part, but I am wiped.

Honestly, we just want to be free of the CPS supervision, but they are telling us the only thing that will get us out of this is to acknowledge there was neglect of Nicholas and then have it be on a list of "child abusers" file 'til Nick is 28. Otherwise, we have to go to trial.

I have to notify them of every move we make. They reach out to anyone I have to disclose to them and it has caused so many problems for us. Sloan wouldn’t take us because of CPS involvement, even though they deal with rare types of cancer, which he had. Most places don’t want to deal with this stuff and we end up being treated weird and sometimes they stop working with us altogether. Nicholas hates having to attend the mandated meetings with CPS.

We simply cannot afford to live on Long Island anymore. The legal fees for this court battle (including my time, energy and resources) and short term housing, along with medical bills that are not covered by insurance (because they are not conventional treatment) continue to be an issue. Some people think there is help for this, but they don’t understand that the bills have to paid upfront or the service is not provided.

We have been living off credit cards for months and they are all pretty much maxxed out at this point.
When Nick was under conventional treatment, I didn’t have custody, so organizations that usually help people when they have children with cancer diagnosis wouldn’t help us with any bills. Now that he is under a different regimen, even though I have custody back since April (with CPS supervision), they won’t help because he isn’t on “chemo”.

We have only been partially free for about 2 months. It isn’t that long. We need to move before the end of summer in order to get Nick settled into a new area before school starts, otherwise it will be a bigger mess!
As many of you know, this is an expensive process….relocating to another state. This, on top of trying to keep on top of Nick’s health regimen and doctors, and numerous court dates, meetings with CPS, etc.

Because I don’t have a regular income at moment, I have to come up a lot of rent in advance. I don’t know how I am going to do all of this.

Please help me keep Nick well and get him stable before the beginning of school. I know once we can stabilize, I will able to begin to get some work in. The schedule up til now has been horrendous and the short term airbnb/hotels have not allowed us to be set up the way we would need to be in order to be truly productive. There are a couple of people who said they have part time work for me starting in the fall. The schedule will be super tough, but I will figure it out….and I expect the court dates will be complete shortly after as well and then I won’t have to travel back and forth for court appearances (more time and money wasted). I may be able to get Nick into a summer camp in August as well. I know that will make him feel really good.

Thank you in advance for any help or support (prayers) which you can offer. We really need them now. This is a turning point for us and hopefully the beginning of a new, long life for Nick. No amount is too small. I just ask that you continue to share our story. Also posting updates on FB @justicefornickny

Thank you and God bless.
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One year post diagnosis update. By the way, the pictures above are very recent- the one on the left is Nick on his way to his 8th grade graduation. He has gained all his weight back and then sone and even grew a couple of inches!

I know its been a really long time since I have written an update. I have never been a great communicator when I am in crisis and it’s been an ongoing crisis now for over one year. I don’t have much help and no family on Long Island. Many people who we did know went by the wayside over the past year due to their disagreement and judgement of me regarding the choice of medical treatment for Nicholas. Some updates I have been able to keep up with on FB. @justicefornickny

There are the people who have helped us who haven't given up either and that’s what keeps us going because it sure has been rough….and it’s not over.

As I sit here on the eve of my birthday and think about what I would want if anyone was to ask-would be to ensure Nick stays well.

A quick rundown of what has happened. Jan 10 Nick had chemo. Jan 17 they wanted to give Nick chemo and do a bone marrow biopsy. He told them no chemo, just biopsy. Jan 24 they told us Nick was still in remission. He told them no more chemo. We were in court numerous times on this and the violation hearing during Jan, Feb and March. The doctor from Winthrop testified against me and on April 1, the Judge found me guilty of violating a court order when I took Nick to a different doctor in Florida. April 1 custody was returned to me. May 6, Nick’s port was removed after fighting for a court order to have it done and trying for over 3 months to find a doc who would take it out. Nick has been under the care of a different doctor in New York since January. More court/ upcoming trial on abuse and neglect. Next court date July 15.

Most people don’t ever have to deal with a child who is diagnosed with cancer, as it is not that common. So it’s hard for people to relate-I get it. The truth is that the 3.5 years of chemotherapy and bone marrow transplants, etc. they wanted to give Nick is only one way to deal with this diagnosis-and we chose a very different path….hence why we have been fighting, however you would think they would at some point acknowledge the truth and their mistakes; or at the very least, let us go already so we can focus our time, money, and resources strictly on keeping Nick well. I stupidly believed that CPS and the Court system was supposed to put the best interest of Nicholas as the priority, but I have been shown time and time again they are not interested in doing that.

The path we chose focuses more on boosting the body’s immune system and doing other things to prevent relapse, so it’s a much different picture. Nick doesn’t look sick like he did when he was on chemo, so many people think it’s business as usual, but that is not accurate. We know he is not out of the woods yet. He needs to stay on a strict regimen for at least 18 months and then continue to be monitored. None of it is covered by insurance. He also was not able to return to school but part time and not sure yet about this coming year. He did graduate the 8th grade and is now officially a high schooler!!!

It's about one year and two weeks since Nick went into the emergency room and was later diagnosed with a rare form of leukemia (MPAL). It’s about 11 months since the beginning of the hostile legal battle between CPS and our family.

We tried leaving NY in order to have our dollars stretch much further for Nick’s needs but CPS ordered us back to NY and since the end of October we have been living in hotels and Airbnb with very little of our belongings-just some clothes, food and dishes, etc.

Most parents who have children diagnosed with cancer have enough to deal with, including watching their child lose their lives overnight and suffer from toxic treatments with no guarantee they will ever get better. The financial struggle is there even when there are two parent families and they have stable homes, etc. The conflict between working or being present with your child is a never-ending battle. Many times, the jobs go by the wayside for at least one parent and if you are only a one parent household to begin with like I am, you’re screwed. Many people didn’t agree with any of my choices, but I wasn’t going to let my son go through this alone, especially when the hospitals and CPS were making mistakes which nearly cost Nick his life unnecessarily.

On top of dealing with what others do when their children are diagnosed with cancer, we have had the additional burden and trauma of losing custody of Nick for months, forced unwanted medical treatment, constant moving, serious legal battles with continual court dates and legal research……..many times just to save Nick’s life because they kept placing him further in harm’s way. All of this has been astronomical emotionally, mentally, spiritually, and financially. Honestly, I am tired.

Due to the temporary housing situation, we have not always had access to a kitchen when we need. I make Nick fresh organic juices, salads, protein smoothies, etc, as well as herbal teas and tinctures, etc etc, but when I don’t have access to a kitchen we have had to buy take out from places which make this type of food, and it is extremely expensive.

The great news is Nick is doing extremely well! July 10, 2019 is the SIX-month mark of being officially off chemo and still in remission!!!! He is a walking, talking example of what is possible. He is a true warrior and I am super proud of him.

We are really at a crossroads at the moment because we are now allowed to leave NY. We need to move out of New York and find affordable, stable, long-term housing and stay on top of Nick’s regimen so he continues to stay well. We need to get him a few things we haven’t been able to like a rebounder, etc. At some point I want to get him a clear light sauna too! In any event, I am up to my eyeballs representing myself in court at this point and the next court date is July 15.
Please pray for us that we are able to leave NY soon and find a wonderful affordable home for Nick to live in. We want to leave soon so we can get settled in before school starts. Even when we leave, the legal issues will follow us. We still have to travel back here for court. CPS here will reach out to CPS where we move and have them supervise us there. It’s all too much honestly.

We are grateful to all of you who continue to pray for and support us. Any help you can give would mean the world to us, as it always has. No amount is too small. Also, whole foods gift cards are greatly appreciated. Our mailing address is PO Box 957, Huntington NY 1143. Please share our story far and wide and pray we can raise the funds to locate to a place which will allow Nick to have what he needs to stay well and recover from all the trauma he has faced this past year.
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I apologize for not updating earlier. Things have been super difficult and traumatizing.

We are at the 90 day mark of forced chemotherapy. From day one, I have asked for a trial. Everyone involved has dragged their feet and it appears as though the Court is purposely delaying proceedings in order to prolong Nick's forced treatment because the Judge does not agree with our choice of treatment.

This is a violation of my due process rights and my parental rights to choose medical treatment for my child. It is amazing to me that these people have no accountability or liability to my son for the damage they are inflicting upon him.

The Court has not yet given us a trial. THREE MONTHS OF FORCED MEDICAL TREATMENT WHICH HAS AND CONTINUES TO HARM NICK. A couple of weeks ago, the chemo Dr. Weinblatt forced on him caused a reaction in which his throat closed and very little air was able to pass until they stopped the chemo and administered benadryl. He wrote it up that Nick had a "sensation" in his throat and that's it! Never mentioned his inability to breathe or anything. When questioned, he completely denied anything happened with Nick's breathing. Thank God I was there to witness the whole thing. Nick told me later he thought for sure he was going to die because he couldn't barely get air.

My attorney stepped off the case Jan 4, just 4 days before the Jan 9 trial date. This trial could have been over with by now!

This move put Nick further in harm's way for another 30 days, delaying the trial by a minimum of one month's time.

That's the BS which has transpired since last I wrote. The Judge let him off the case just 4 days before trial (which is unheard of!)

I have bills totaling over $100, 000 for attorneys who have made virtually no progress on this case in three month's time. That is separate from Nick's medical bills, food and other things he desperately needs right now.

Please share the link to the gofundme page:
https://www.gofundme.com/help-nick-get-healthy-again

So all the trial dates were put off again and everyone goes on with their lives without concern or care for Nick. It is so disgusting to continue to have to face the truth, which is no one cares about Nick. Not CPS, Not the COURT, not the DOCTORS, not the ATTORNEYS (except Nicholas' attorney).

Nick has had it and so have I. I have asked CPS and Dr. Weinblatt on several occasions to work with me to come up with a viable solution which will be in Nick's best interest. They refuse each time. CPS refuses to speak with me even though I have requested meetings with the decision makers. Oddly enough, this case had been handled directly and/or decisions made only with approval by Suffolk County Commissioner John O' Neil and now Dennis Nowak, who was also involved from beginning. I sure would like to know why the Acting Suffolk County Commissioner is personally handling Nick's case if there are no politics involved and no other agenda in direct conflict with Nick's best interest.

I desperately need to find another attorney who will fight for us help get the chemo stopped ASAP.

Nick had another test last week, which shows there continues to be no sign of cancer in his body. He is in complete remission, cancer-free! When I took Nicholas to his appointment two days ago, he told Dr. Weinblatt he was not allowing Dr. Weinblatt to touch him anymore because he doesn't feel comfortable and that he is not consenting to the treatment. Dr. Weinblatt told him he would call CPS and referenced something about a change in custody. I sure would like to know how Dr. Weinblatt has inside information into what CPS is planning.

As if all of this isn't bad enough, Dr. Weinblatt has been slandering me for weeks to colleagues and staff in the office so that when I am there, it is awkward for everyone. He has been inaccurately noting the medical record about me as well.

When is JUDGE HUGHES GOING TO DO THE RIGHT THING BY NICK AND RELEASE US from being prisoners of New York State and Dr. Weinblatt - a doctor who says he can't make a move without contacting CPS? My last attorney said it would never happen. Other attorneys I have contacted in order to get help tell me they won't touch this case with a ten foot poll because it is so corrupt.

I am going to ask everyone for their prayers right now. The trial is going to be coming up hopefully in February and I may ask for your support at that time via writing in or signing petitions, etc if you feel it resonates with you.

Please sign and share the change.org petition as well:
https://www.change.org/p/andrew-m-cuomo-support-nicholas-right-to-choose-non-toxic-treatment

Thank you in advance for being a wonderful support to us during this terribly devastating and injurious situation which has gone on for way too long.

God Bless all of you. Enjoy your weekend.
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First I wanted to wish everyone Happy Holidays! We are super grateful to everyone who supported Nick and me in any way, shape, or form. I am beyond tired and I can't tell you how difficult things have been. Your prayers and support have been extremely helpful.

To date, I do not have custody of Nick. The condition of CPS returning him to me is for me to agree and consent to give him chemo, which will hurt Nick and our case long term and they know it, which is why they are making it impossible. I requested they put language into the agreement to accommodate the fact I do not believe this is in his best interest. I explained if I am mandated by a court to do so, I will comply with a court order but will not agree to give chemo voluntarily.

CPS and the Court refuse to do this. They ask every time if I am under duress, which to me is so dumb. Of course I am agreeing under duress to anything they are doing. What other choice are they giving?! NONE!

We are beyond the 60 day mark for forced chemo and trial dates which are supposed to be timely. Nick is hanging in as best as he can but he is not really doing well in the big scheme of things. He is such a smart child and when anyone lies to him he knows it instantly.

Dr, Weinblatt of Winthrop Pediatric Associates is the sole reason Nicholas is being forced into this treatment designed for a different type of cancer , which has never been tested or proven successful for his diagnosis. Dr. Weinblatt is the sole reason Nicholas was taken from my care and custody. There was a court order which CPS agreed to on October 9th issued by Judge Theresa Whelan which gave us permission to go anywhere we wanted with Nicholas because he was in remission.

Dr. Weinblatt didn't like that and threatened to call the police if CPS didn't intervene and remove him from the team of doctors who were overseeing his care.

Nicholas and I have informed CPS, the attorneys and Winthrop hospital staff (Dr. Weinblatt included) on numerous occasions over the past 60 days that Nicholas does not want Dr. Weinblatt touching him or doing anything to him. Nick has stated that he hates Dr. Weinblatt and it causes him tremendous anxiety and stress when forced to face and interact with Dr. Weinblatt. He feels violated every time he is forced to have Dr. Weinblatt touch him or examine him, or even have to speak with him, etc.

Because our requests fell on deaf ears for so long, Nick's guardian finally agreed to ask for something to be done and even that failed. Dr. Weinblatt's position remains the same. He is not going to make any changes regardless of the negative impact to Nicholas.

So I asked almost 3 weeks ago for Dr. Weinblatt to write a medical summary so I could get Nick transferred out of Winthrop to somewhere he could feel safe and comfortable. Dr. Weinblatt refuses to write a summary that does not include extraneous information about his opinion of me, all of which is untrue and slanderous. It's amazing how these doctors can literally keep a child hostage and obstruct them from going anywhere else. You have to wonder what the heck is in it for them (and CPS) that they would hold on to a child so tightly.

I even tried transferring his care to a very experienced oncologist and CPS' attorney told me he wasn't a "real doctor"...that he was only board certified in oncology and that didn't count. (this supposedly coming from Dr. Weinblatt) I often wonder if they hear themselves talk and just how crazy they appear. It is truly scary.

The psychologist at Dr. Weinblatt's office said she can't do anything about the situation because Dr. Weinblatt is her boss and it's up to him whether or not he makes the change, even though the psychologist knows it is not in Nick's best interest to have the person solely responsible for taking Nick away and forcing treatment he doesn't want, in his face daily. Dr. Weinblatt is hostile many times toward Nicholas and me, especially when we have questions or concerns about Nick's treatment and the terrible side effects the drugs are causing him. Nick gets very angry when Dr. Weinblatt does this to us. There are five other doctors in the office and they could easily see Nicholas if Dr. Weinblatt wanted them to. We truly believe at this point, Dr. Weinblatt is enjoying torturing Nicholas. He pretends to be nice but it appears as though he is actually quite the opposite. His "nice" is all a show.

On another note, things are becoming increasingly difficult because the organizations who help families when their children are diagnosed with cancer have been saying they can't provide help because I don't have custody. This makes it very difficult for us to survive. I spend all my days taking care of Nick, taking him back and forth to treatment, to tutors, supporting him after treatment when he is not well. When I am not doing that, I am researching solutions, talking to people and trying to help get Nick out of this disgusting mess. I am the one solely responsible for his care in every way, including financially.

The key players involved seem to have their own agenda - whether it be their schedules, jobs, politics, money, vacation, convenience, their own discomfort of going against the grain or whatever the case may be. I have no agenda or other priority than looking out for my son's best interest. It infuriates me that none of the key players have the ability or willingness to do the same.

I know all of you have done so much to support us and we are truly grateful. As the New Year approaches, I am going to request you continue to pray for us-for Nick to be released from this traumatic chaos and torture. Pray he be released back to my care and custody so I can take him to the team of doctors and the environment we know without any doubt are in his best interest.

If any of you are familiar with or can provide referrals to organizations who would be willing to help support us right now, it would be greatly appreciated. Please send any info through the FB page about Nick.

https://www.facebook.com/justicefornickny/

Please continue to share the gofundme and the petition showing your support for Nick's freedom to choose what's in his best interest.

https://www.change.org/p/andrew-m-cuomo-support-nicholas-right-to-choose-non-toxic-treatment

Thank you so much in advance. Happy 2019 to all of you! :)
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$39,636 of $50,000 goal

Raised by 648 people in 10 months
Created September 10, 2018
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