Help Nick Stay in Remission Safely

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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  • Sabrina Celeste-Presby 
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Organizer 

Candace Gundersen 
Organizer
Huntington, NY
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