Retinoblastoma

Name: Retinoblastoma

Childhood Cancer Name: Retinoblastoma

Main types of Retinoblastoma:

  1. Congenital (hereditary) retinoblastoma
  2. Sporadic (non-hereditary) retinoblastoma
  3. Intraocular retinoblastoma (within the eye)
  4. extraocular retinoblastoma (cancer has spread beyond the eye)

Special cases

  1. Trilateral retinoblastoma: Refers to a syndrome that occurs in 5% to 15% of patients with heritable retinoblastoma defined by the concurrence of bilateral retinoblastoma and a pinealoma (tumor in the pineal gland, a small endocrine gland in the brain).
  2. Progressive retinoblastoma: is retinoblastoma that does not respond to treatment. Instead,  cancer grows, spreads, or gets worse.
  3. Recurrent retinoblastoma: is cancer that has recurred(come back) after it has been treated.

Childhood Cancer Localization: Retina, eye.

Childhood Cancer Noticeable Symptoms: A white color in the center circle of the eye (pupil) when the light is shone in the eye, such as when taking a flash photograph, eyes that appear to be looking in different directions, visual loss.

Parents often first detect it, because the parent notices white-eye in pictures of their children. This is why a Father of a Retinoblastoma patient created an app called “white eye detector” to help parents detect eye cancer in children. Read more about it here: http://mychildscancer.org//?p=6296 

Parents tip: if you recognize this sign in a photo, contact a doctor or the parents of the child immediately.

Childhood Cancer Diagnostic method: Ophthalmic exam, ultrasound, magnetic resonance imaging (MRI).

Childhood Cancer Treatment: Surgery, Chemotherapy, Radiation, Photocoagulation (using lasers to kill small tumors or the blood vessels that feed them), Cryotherapy (using cold to freeze and kill small tumors), Thermotherapy (using a type of laser to apply heat to kill small tumors) (see more details below).

What is Retinoblastoma? A type of cancer that starts in the nerve cells lining the back of the eyeball (retina), although rare, retinoblastoma is the most common eye tumor in children.

To watch a short video of general information about Retinoblastoma click here: http://mychildscancer.org//?p=6293

Explanation: Retinoblastoma is a form of cancer that develops on the retina. The eyes develop in the womb, the eyes have cells called retinoblasts that divide into new cells and fill the retina. At a certain point, these cells stop dividing and develop into mature retinal cells. The retina is the structure at the back of the eye that senses light. It sends images to the brain which interprets them, allowing us to see. Rarely, something goes wrong with this process. Instead of maturing into special cells that detect light, some retinoblasts continue to divide and grow out of control, forming cancer known as retinoblastoma.

Characteristics: It is the most common eye tumor in children and it usually occurs before the age of five. It can occur in one eye (unilateral) or in both eyes (bilateral). If left untreated, retinoblastoma almost always grows, making the eye blind and painful. AND MAY ALSO SPREAD BEYOND THE EYE BALL.

Biology: The tumor develops when there is a gene abnormality on chromosome number 13. Genes are the instructions in the cell and they tell the cells how to grow. The normal RB1 gene helps keep cells from growing out of control, when there is a mutation in this gene, people have a mistake in the instructions in their cells, and the cells keep growing without control. This abnormal gene may either be inherited from a parent or happen for the first time at an early stage of development in the womb. 90% of retinoblastoma cases develop “out of the blue” and without warning. 10% have a family member with retinoblastoma. In the developed world, and if diagnosed in an early stage retinoblastoma can be cured successfully using a range of treatments and 98% of children will survive retinoblastoma.

Congenital (hereditary) retinoblastoma: About 1 out of 3 children with retinoblastoma have a germline mutation in one RB1 gene meaning all the cells in the body have a defective RB1 gene. For most children (75%) this mutation happens sporadically during the development inside the womb. The other (25%) of children have inherited it from one of their parents. Kids who carry the genetic mutation usually get more than one tumor and are likely to develop the disease in both eyes. Most children with hereditary retinoblastoma don’t have an affected parent. But these children can still pass their RB1 gene mutation on to their children.

Sporadic (non- hereditary) retinoblastoma: 2 out of 3 children with retinoblastoma do not have the RB1 gene mutation in all the cells of their body. Instead, the RB1 mutation happens early in life and first occurs only in one cell in one eye, it’s not clear what causes these changes.

Signs and Symptoms:

  • Patients with heritable disease present at a younger age, usually by 12 months.
  • Most cases present with leukocoria also known as “Cat’s eye”, white eye or glow. A child with a white pupillary reflex noted by the parents, identified in photographs or found on examination. Normally, the center of the eye appears red in response to the camera flash, but in retinoblastoma, the center of the eye may have a white glow. For more information and examples about the “glow” click here http://knowtheglow.org/facts/
  • Strabismus is the second most common presenting sign, development of misaligned eyes over weeks to months.
  • Vision problems: Some children are diagnosed as young babies because they do not appear to be developing normal vision. This can be detected with an electroretinography to measure vision (in small children) by measuring the electrical activity of the retina.
  • Pain from increased pressure in the eye as the tumor grows.
  • As the tumor progresses, patients may present with orbital or metastatic disease (in other parts of the body).

For a quick video explaining the main signs and symptoms of Retinoblastoma click here: http://mychildscancer.org//?p=6291 

Diagnosis:

  • The heritable form of retinoblastoma tends to develop earlier in life (at age 12 months or less) than the non-inherited type (more commonly diagnosed at age 24-30 months).
  • The diagnosis of retinoblastoma is usually made without pathologic confirmation. An examination by a pediatric ophthalmologist, usually under anesthesia. Some very young and older patients can be examined without general anesthesia.

Laboratory test:

  • When a retinoblastoma is diagnosed, your child may have tests to check the exact position and size of the tumor.
    • Blood test
    • Ultrasound scan to determine thickness or height.
    • Magnetic resonance imaging (MRI) scan, used to evaluate intra / extraocular and intracranial extension.
    • Tumor staging (i.e. bone marrow examination, lumbar puncture and/or radionuclide bone scan) should be performed only in patients at risk of extra-ocular metastases.

Genetic counseling:

Genetic counseling is an integral part of the management of patients with retinoblastoma and their families, regardless of clinical presentation.

  • Blood and tumor samples can be tested to determine whether a patient with retinoblastoma has a mutation in the RB1 gene. Once the patient’s genetic mutation has been identified, other family members can be screened directly for the mutation with targeted sequencing.
  • If there is more than one retinoblastoma, affecting one or both eyes and/or if any other relatives have had this disease, it is crucial to get genetic counseling and tests.
  • The first step is, therefore, to find out whether any relative had retinoblastoma, then to examine if the parents as well as any brothers and sisters for retinal tumors or tumors in other parts of the body.
  • Common practice for the parents and siblings of patients with retinoblastoma is to have screening ophthalmic examinations to exclude an unknown familial disease. Siblings continue to be screened until age 3 to 5 years or until it is confirmed that they do not have an RB1 gene mutation.

 

The stages of Retinoblastoma are:

  • For treatment purposes, Staging categorizes retinoblastoma that is either intraocular (is found in one or both eyes but does not extend beyond the eye) or extraocular ( cancer has spread beyond the eye to tissues around the eye or to other parts of the body).
  • Several intraocular staging systems have been in use for many years to help doctors plan treatment. However, the recent success of clinical trials (research studies) demonstrating the effectiveness of chemotherapy to shrink tumors has led to the development of a newer staging system called the International Classification System.

For more information about the stages click here: http://www.cancer.net/cancer-types/retinoblastoma-childhood/stages

Treatment: The type of treatment is individualized depending on a number of factors including number (one eye or both), location of tumor, size of tumor, and vision prognosis.

  • The main priority is to save life; the next objective is to conserve as much vision as possible.
  • It includes a multidisciplinary team of pediatric oncologist, ocular oncologist and pediatric ophthalmologists, radiation pediatric oncologist as well as other specialist.
  • If the ophthalmologist feels that useful vision cannot be obtained, then removal of the eye (enucleation) is recommended.
  • The standard for the treatment of retinoblastoma has been evolving and newer approaches have increasingly avoided radiation therapy, when possible. These newer approaches often involve the use of chemotherapy.
  • If the tumor is too large for ‘focal’ therapy (i.e. laser photocoagulation, cryotherapy) can first be treated with chemotherapy to reduce tumor size until is small enough for laser or cryotherapy.

 

Types of treatment:

  • Laser therapy: a laser is used to destroy blood vessels that supply oxygen and nutrients to the tumor.
  • Cold treatment, cryotherapy: uses extreme cold to kill cancer cells.
  • Heat treatments: This process uses heat to destroy the cancer cells and may be combined with chemotherapy or radiotherapy.
  • Chemotherapy: chemotherapy may help shrink a tumor so that another treatment may be used to remove the remaining cells. In this cases, Chemo may also be injected around the eye (periocular) for local treatment.
    • Stem cell transplant: to replace blood-forming cells in the bone marrow that have been killed by chemo and/or radiation.
  • Local Chemotherapy:
    • Intra-arterial chemotherapy: It is not commonly used and tends to be reserved for tumors that haven’t responded well to the standard treatment or if a tumor comes back. The procedure involves passing a tiny catheter (plastic tube) through the femoral artery (the artery in the groin), all the way up until it is in the ophthalmic artery (the artery in the eye).
    • Intra-vitreal chemotherapy: Children who have developed seeds (small leftovers of the tumor) in the vitreous (the jelly part of the eye) may be offered injections of chemotherapy directly into the eye.
  • Radiation therapy : uses high-energy rays from a machine to destroy the cancer cells. Important structures and vulnerable tissues surround the eyes; it’s essential to treat cancer of the eye with radiation that can be carefully controlled.
    • Plaque Radiotherapy: by placing a temporary radioactive implant known as a plaque behind the eye for a few days.
    • External beam radiotherapy: A beam of radiation is directed at the tumor via an x-ray machine called a linear accelerator. External beam radiation therapy has two modalities Intensity-modulated radiation therapy (IMRT) and Proton beam therapy (PBRT) Early results with proton beam therapy are promising, especially in patients who showed no response to other treatment modalities, but it’s still fairly new, and there is very little long-term data on its use for retinoblastoma. There are only about 15 centers that do proton beam therapy in the United States at this time. Many centers now use newer types of external radiation therapy, which can target the tumor more precisely. This lowers the doses that surrounding normal tissues get, which may help reduce side effects. https://www.floridaproton.org/cancers-treated/pediatric-cancer/retinoblastoma
    • Side effects: sometimes causes cataract, damage to the retina (the inner lining at the back of the eye), and the optic nerve if it was in the area being treated. It is sometimes possible to reduce the radiation damage and hopefully improve or maintain sight by giving injections of drugs into the eye, such as bevacizumab (Avastin).
    • For more about side effect of radiotherapy and how to cope with them click here: .http://www.cancerresearchuk.org/about-cancer/type/eye-cancer/treatment/radiotherapy/side-effects-of-radiotherapy-for-eye-cancer
  • Surgery: to remove the eye, if needed.
  • Enucleation: If the tumor is very large and has damaged the sight in the eye beyond repair, then the ophthalmologist will recommend that the eye removed. This operation is called an enucleation. Enucleation is only recommended when it is felt other treatments would not be effective, and/or would put the child’s life at risk. When that one eye is removed, in cases, which only that one eye was affected, more than 90 percent of those patients do not need any additional treatment.In patients with both eyes affected: if one eye is removed, treatment will focus on saving the remaining eye.

About treatment.

  • Most patients with retinoblastoma can be cured, especially if the disease is confined to the eyes. If untreated, it spreads within and outside the brain and is rapidly fatal.
  • Retinoblastoma treatment is highly effective if the disease is caught early.
  • For more information about treatment procedures in an easy language check this link: https://bartshealth.nhs.uk/media/163554/Retinoblastoma%20Parents%20Pack.pdf

Experts:

 

Late effects of the treatment:

  • Diminished orbital growth: If the eye has to be removed the eye socket (orbit) on that side may not grow as much as the other, leading to asymmetry. This can be prevented by use of correctly sized eye implants.
  • Visual-loss: Patients with retinoblastoma demonstrate a variety of long-term visual-field defects after treatment for their intraocular disease, local chemotherapy, laser or radiation. For example after whole eye radiotherapy children may develop a cataract (clouding of the lens of the eye).
  • Hearing loss: Carboplatin is commonly used in chemotherapy for retinoblastoma and this medicine can cause long-term hearing loss.

More about retinoblastoma:

  • Very young children who are diagnosed with retinoblastoma in one eye can develop a tumor in the second eye several weeks, or even months, later so regular eye examinations are very important.
  • Patients with treated retinoblastoma as well as siblings who are at risk of inheriting the tumor need to be monitored indefinitely.
    • Every 3-4 months until age 3-4 years, every 6 months until age 5-6 , at about age 8 years can be examined annually. The patient and parents should be warned about signs of secondary tumors during these examinations so in any case they can call and visit the doctor. This may vary according to your doctor and treatment.

Follow up, late effects:

  • Periodic examinations of the unaffected eye are performed until the germline status of the RB1 gene is determined.
  • Children with a germline Rb1 mutation may continue to develop new tumors for a few years after diagnosis and treatment and they need ongoing surveillance. Commonly examination is repeated every 2-4 months for at least 28 months. Regular brain scans to detect any brain tumor as early as possible.
  • Children with the non-heritable type of retinoblastoma – which is the most common type – are not thought to be at any greater risk of secondary cancers than anyone else.
  • Regular sight tests to ensure that they can see.
  • Regular hearing tests in case any of the therapeutic agents have impaired hearing.

 

The main goals include

  • Preserve patient´s life.
  • Preserve as much vision as possible.
  • Decrease risk of late sequelae from treatment, particularly subsequent neoplasms (SNs).

 

CANCER ADVICE FROM PARENTS OF CHILDREN WITH RETINOBLASTOMA;

  1. For the first ophthalmology referral if you have any unusual photos of your child’s eye/s, take these with you.
  2. Since the treatment includes many interventions, it is crucial to find a specialized clinic with a formed clinical team including: pediatric oncologists, ocular oncologists, pediatric ophthalmologists, surgeons, radiation treatment specialists, rehabilitation specialists and genetic counselors.
  3. After treatment is completed, take in consideration that physical therapy, speech therapy, and a low-vision rehabilitation if needed can improve significantly the quality of life of the children. Ask your pediatric oncologist for more information.
  4. There are some target therapies and clinical trials with Intravitreal (inside the eye) Chemotherapy for more information click here https://www.stjude.org/research/clinical-trials/iret-retinoblastoma.html
  5. If the eye was removed, with the right information and education children often find their monocular vision doesn’t limit them in any way. An artificial eye is placed, kids, parents and school teachers (as well as other people involved in the care of the child) need to get used to removing, wash and replace the eye. When children grow up sometimes become more conscious of their artificial eye. Encourage them to focus on their strengths and not to view themselves as different. Here is some information and child’s testimonies that can be useful and encouraging. http://www.rnib.org.uk/information-everyday-living-family-friends-and-carers-insight-magazine-insight-features
  6. Seeking support, organizing your child’s health information, making sure all of your
    questions are answered, and participating in the decision-making process are other steps.
  7. Questions to ask the doctor, here is a list of questions that you might want to ask  the doctor : http://www.cancer.net/sites/cancer.net/files/asco_answers_retinoblastoma_childhood.pdf

 

St. Jude is the only pediatric cancer research center that does not charge its patients´ families for treatment that is not covered by insurance. Thus, St. Jude has never refused to treat a child because of the family’s inability to pay. Learn more here: http://stjudedonate.weebly.com/faq.html

 

Link for more information:

Research:

References:

Other links

The Avrahami Family (Somerset, NJ)

Orya Avrahami is the son of Anael and Roy. He likes Dinosaurs and Spaceships.

Orya is 7 years old and has been battling cancer during the past couple of months. As part of the treatment, Orya and his family have come to the U.S. to undergo cancer treatment at ProCure Proton Therapy Center in Somerset, NJ. They are expected to stay here for about two months, starting September 2016.

While Orya and his parents will be in and out from hospitals almost 7 days a week for treatment, his two brothers (4 & 5 months baby) will stay with their grandmother at their nearby rented apartment.

Orya is a fighter! Let’s help him get through this and let’s help his family feel at home away from home. MyChild’sCancer invite our communities to support our families: if you would like to get involved, here are 3 easy ways for you to lend a helping hand:
1 – Send them some essential items from their Amazon Registry.

2 – Make a monetary donation (two clicks away)

3 – Provide hands-on support (cook, babysit or just a friendly visit) via the form below.
We wish you a prosperous year filled with happiness and health, and may you always be on the giving side.

 

Last Updated: Sep 29, 2016

[ENDED] The Saban Family (NJ)

Lee-Ann Saban (8 years old) is fighting cancer since early this year. Lee-Ann came to Somerset with her parents (Inbal and Oren) and her sister (Shani, 12) to receive radiation therapy treatment at Procure Center in Somerset NJ, and Chemotherapy at St. Peter’s hospital in New Brunswick NJ. The family will stay here a couple of months, starting July 14th 2015.

Originally from the city of Haifa in Israel, Lee-Ann loves to play paint and arts and crafts. Both sisters LOVE anything that has to do with fashion, styling, design etc.

MyChild’sCancer, in cooperation with “Circle of Hope” (run by Chabad in Hillsborough), would like to invite our communities to support our families. If you would like to get involved, here are a few things you can do:

Update: Upon completing Lee-Ann’s radiation treatment in NJ, the family has returned to Israel last week to continue with her cancer treatment in Israel. A few more months will be needed to estimate the effectiveness of treatment received here in the U.S. however his doctors are very optimistic.

We are glad to say that despite the hurdles of the treatment, the family was able to enjoy most of their free time here, largely thanks to the amazing support from the local community. Lee-Ann and her parents were moved by it and said that it made a big difference in their lives at such challenging times. They are forever grateful for all the love and support they have received.

On behalf of the Saban family, MyChild’sCancer would like to send a big THANK YOU to all our supporters.

May you always be on the giving side.

Last Updated: Sep 25, 2015

 

 

[ENDED] The Cohen Family (NJ)

Shay-Lee Cohen (4 years old) is fighting cancer since early this year. Shay-Lee came to Somerset with his parents (Meirav and Liron) and his brother (Ilay, 6) and grandmother Aliza to receive radiation therapy treatment at Procure Center in Somerset NJ. The family will stay here a couple of months, starting July 7th 2015.

In Israel, Shay-Lee loves to play Lego and soccer, Ride his bike and rollerblades, watch movies, paint, swim and many other activities children do in an Israeli Kibutz. Ilay also likes to swims and practice Capoeira, and most likely to play with other kids. Both brothers love to play video games and Sony Playstation.

MyChild’sCancer, in cooperation with “Circle of Hope” (run by Chabad in Hillsborough), would like to invite our communities to support our families. If you would like to get involved, here are a few things you can do:

Update: Upon completing Shay-Lee’s radiation treatment in NJ, the family has returned to Israel on Sep 30th of 2015 to continue with his cancer treatment in Israel. A few more months will be needed to estimate the effectiveness of treatment received here in the U.S. however his doctors are very optimistic.

We are glad to say that despite the hurdles of the treatment, the family was able to enjoy most of their free time here, largely thanks to the amazing support from the local community. They were moved by it and said that it made a big difference in their lives at such challenging times. They are forever grateful for all the love and support they have received.

On behalf of the Cohen family, MyChild’sCancer would like to send a big THANK YOU to all our supporters.

May you always be on the giving side.

Last Updated: Oct 1, 2015

 

 

[ENDED] The Schwartzman family (NYC)

Emily is a vibrant, happy 3 year old, who arrived to NYC for treatment at the end of March 2015. Emily was diagnosed with cancer six months prior to her arrival and is undergoing a few months-long clinical trial at Memorial Sloan Kettering Cancer Center in NYC. She loves singing and dancing, playing outside, and is a big fan of pretend play.

Emily came to NYC with her parents, leaving her two older sisters back at home in Israel. We wish for them to be reunited soon, hopefully with a cancer-free Emily!

Important notice for visitors! It’s flu season. Please note that due to a weakened immune system, Emily is not allowed to be near sick people. In fact, she spent the past few months mostly in isolation. If you are coughing, sneezing, have a skin rash or just don’t feel well at the day of your visit, please postpone your visit until you are feeling better. Last minute cancellation are perfectly understandable, acceptable and are the right thing to do if you or your child are not feeling well.

MyChild’sCancer would like to invite our communities to support our families. Please make a donation to MyChild’sCancer OR if you would like to get more personally involved please follow our dedicated Facebook page on which we will post new needs as they come up. Additionally, please re-visit this page to see an updated list of needs as shown here below. You are welcome to fill out and submit the form below with your contact details and the way you wish to help and we will inform the family and get in touch with you as soon as it becomes applicable/relevant.

Update:

Following a successful treatment, Emily and her parents returned to Israel. Emily still has a long road ahead, including recovery and getting back to normal life, and we hope that she will remain cancer free.

While here for treatment, the family enjoyed the support of our community. Visit ‘our impact’ page to see what Marina (Emilee’s mom) and other parents had to say about our effect on their lives.

MyChild’sCancer would like to THANK our great community for helping this family in a time of need.

Last Updated: June 26, 2015

 

[ENDED] The Yahav Family (Somerset, NJ)

Iddo Yahav (4 years and 8 months old) is fighting cancer since November 2014. Iddo came to Somerset with his parents (Liat and Ophir), his sister (Shanny, 11) and brother (Itay, 8) to receive radiationtherapy teatment at Procure Center in Somerset NJ, and Chemotherapy at St. Peter’s hospital in New Brunswick NJ. The family will stay here a couple of months, starting March 2nd 2015.

In Israel, Iddo loves to play Lego and soccer, Itay swims and practice Kick-Box (Muay-Thai), and Shanny is dancing, singing and playing the Guitar. Both Iddo and Itay love to play the Sony Playstation. Both Shanny and Itay love to read.

MyChild’sCancer, in cooperation with “Circle of Hope” (run by Chabad in Hillsborough) and Bikur Holim in Highland Park, would like to invite our communities to support our families. If you would like to get involved, here are a few things you can do:

Update: Upon completing Ido’s radiation treatment in NJ, the family has returned to Israel on May 5th of 2015 to complete Ido’s cancer treatment in Israel. A few more months will be needed to estimate the effectiveness of treatment received here in the U.S. however his doctors are very optimistic.

We are glad to say that despite the hurdles of the treatment, the family was able to enjoy most of their free time here, largely thanks to the amazing support from the local community. They were moved by it and said that it made a big difference in their lives at such challenging times. They are forever grateful for all the love and support they have received.

On behalf of the Yahav family, MyChild’sCancer would like to send a big THANK YOU to all our supporters.

May you always be on the giving side.

Last Updated: May 6, 2015

 

 

NeuroBlastoma (9 months old boy)

This testimonial is about a Neuroblastoma first diagnosed at the age of 9 months old. Today this boy is 4.5 years old and fought successfully 2 relapses.
This is an amazing testimonial from the relapse master, Muli’s mom.

In this interview, MyChildCancer’s founder, Oded Grinstein, is interviewing Myriam Safrai from Israel about the treatment and challenges her family went through with her son’s Neuroblastoma cancer. Her son, Muli, was diagnosed with Neuroblastoma when he was 9 months old. After early signs were misdiagnosed for a couple of months by the family’s pediatrician, he was diagnosed with a stage 4 NB. On the time this interview was made Muli was 4.5 years old, with no evidence of cancer however learning from past experience his parents were just about to start yet another clinical trial in an effort to prevent a third(!) relapse.

Watch the amazing story of Muli. 4.5 years old including 4 years of treatment, 3 different types of treatment 3 different locations on the globe, 2 relapses and 1 amazing and forth-thinking mother.

This interview is part of MyChildCancer’s mission to extract hidden life-saving information and make it easily accessible to other parents all over the world. Because knowledge saves lives.

Text version:

 

–>Please, state your boy’s name, age, and type of cancer.

Muli, his real name is Shmuel, was diagnosed when he was one year and four months. Now he’s four years and six months. He was diagnosed with NeuroBlastoma high risk, with MYC amplified.

Our story in a Nutshell:

We did all the front-line therapy in Israel, which is the SIOPEN (SIOP-Europe) protocol, after he had the first relapse. He gets two more cycles of chemotherapy, TVD (Topotecan, Vincristine, Doxorubicin) X 2 and TVC X 2 cycles.

He had a huge fungal infection, so we stopped all the treatment, and it was recommended that we do a big trip and enjoy the time that we have left. We moved to Hershey in PA (Pennsylvania, U.S.A) for a medical trial. It was a vaccine trial, with Decitabine. We were in Hershey for six months, and he was still clear after the trial.

I was flying back and forth to Michigan, for the DFMO trial of Dr. (Giselle) Sholler, for nine cycles. Then, he relapsed again, and he had two cycles of MIBG in San Francisco at UCSF Medical Center without any chemotherapy or any other drug, just MIBG, and he was NED (No Evidence of Disease) after the first cycle. We did the second round as a consolidation.

Now, we are in Memorial Sloan Kettering and the purpose is to do the antibodies – one course at least, and after that to do the vaccine trial with Dr. (Brian) Kushner.

–> Could you please tell us about the first signs, and the diagnosis process?

Muli had Anemia. They tried to treat it with Serotonin but it didn’t work. He also had a little bit of hypotonia in the legs and we took him to the pediatrician who said everything was fine. One night, it was difficult for Muli to sleep so I took him to the emergency center because I had a bad feeling. I was feeling something in my stomach, and I am a doctor, I thought he had an infection. When we did the ultrasound, they saw a huge mass in his abdomen. Afterward they did an x-ray and everything began. We did an MIBG and we saw many spots metastasized everywhere in the bone. And so, we started the protocol.

–> You mentioned that he had a pre-condition – Anemia. What were the first signs that you can now relate to the cancer? How long between these first signs and the actual cancer diagnosis?

I think the anemia was the first thing. He was also FTT (Failure To Thrive) so he was not growing so well. I have been to the doctor many times, and I told him everything that he was eating and he said that everything was fine.

So, I think the failure to treat the FTT was the first sign, there was also the anemia. And he also had the hypotonia in the leg, which today we know was caused by the tumor which was compressing his core. These were the three signs that we had. And it’s not that we didn’t notice this signs however it took months to diagnose. We went to doctors but they failed to diagnose. I have been to the doctor just 3 days before I had to take him to the E.R., and he said everything was fine.

–> How old was Muli then?

One year and four months when he was diagnosed and started treatment. Maybe six or nine months when the first signs were noticed. I can’t be sure because it was a growing process.

–> So once you took him to the E.R. and they did the scans, how did they identify the cancer, and how did they identify the type of cancer?

They made an ultrasound first of all and they reviewed the mass. The differential diagnosis for a mass in the abdominal at this age was to find what it is. So they did the biopsy, for two purposes: they needed tissue before the final diagnosis, and they needed also to decide if it’s a high risk or an intermediate risk, since before the age of one year and six months it matters if there is MYC amplification or not. Muli had MYC amplification.

–> You have mentioned that you are a doctor. Most of the people who will see this are not doctors. Please explain about the disease, the different subtypes – you mentioned MYC: is it rare?

In Neuroblastoma there are five stages: 1, 2, 3, 4, and 4S. If a child is diagnosed before the age of one year old, despite if he has metastasis, he would usually have a very good prognosis, and it would be stage 4S.

After that age, the child is usually stage 3 if it a local disease or stage 4 if the patient has a metastatic disease. Muli had metastasis, so he was stage 4.

After that doctors need to decide if he’s high risk or intermediate risk. There are few things that will help to decide if the child is high risk, which is a less good prognosis, or intermediate risk. Within stage 3 and stage 4, and you need to decide if it’s high risk or not. The age is a factor: if more than one year and six months, it’s high risk.
Now within the high risk, you have an equivalent of “very high” risk, and doctors need to look for the factors that will make the prognosis more difficult. One of the most important factors is the MYC mutation: The MYC mutation is a mutation in a specific chromosome. When doctors see in the gene of the cancer cell that amplification exist, and if they see that there is more than ten copies of the gene MYC, it’s “very” high risk.

–> So MYC is a part of a gene?
Yes. And you see the genome and you see that there’s an amplification of the genome of this part of the mutation. Muli had so many that it was very clear.

–> But Muli was under the age of 18 months?

Yes. It was the only good thing, but if you take into consideration all the factors and see what is most important in the staging, the thing that has the most accurate prognosis is the MYC. If you have MYC, it’s not good.

–> So Muli was a year and four months when he was diagnosed, and he had metastasis, so it was stage 4, and he had MYC amplified?

Yes: Neuroblastoma, stage 4, high risk, MYC amplified.

–> Tell us about the SIOPEN (SIOP-European) protocol.

The SIOPEN protocol has five parts. (1) First of all, eight rounds of chemo (2) Afterward a surgery. (3) Then you have a self-bone marrow transplant. (4) After that you get radiation. (5) The fifth and last step is immunotherapy.
For us, it was not too bad. Muli went through the whole protocol very fine. He was clear of all the metastasis after the eight rounds of chemo and before the surgery.
He had the surgery and he recovered very well. After only one week we were at home. After that he had a bone marrow transplant that was very fine. Twenty-six days we were in the isolation room but it’s very short. It was hard, but it was fine. Then he had radiation. It was fine – he was just tired. For the radiation he needed anesthesia every day because he was small. And lastly we had immunotherapy.
For that last part we had two possibilities for immunotherapy; CH18.14 with or without I02. We get it with I02, and it was very hard. Muli had a huge reaction the first night and he almost died. He had a capillary leak, which means that fluids are not staying in the blood vessels and are leaking into the small tissue. The blood pressure dropped to 30 or 50 and he stopped giving urine. We stopped everything. They took us to give him dopamine for the blood pressure, and then we decided instead of giving him the infusion of the antibodies in eight hours, as it should be in the protocol, we gave in about twelve hours. It was also hard and we have done the treatment in the ICU. We finished the first cycle in the ICU, and after that we moved to a different hospital that was more accurate for this kind of treatment and we did it, as I said, in twelve hours. It was hard. It was a hard treatment.
It was very painful. Muli all the time had some complications that were manageable. He had once a Pericardial effusion (fluid around the heart), which was hard. He had pneumonia once. Each time something else, but it was very manageable. for example, his weight was fluctuating: he was keeping so much of the fluid, he gained like 3 kilos in one week. I needed to buy him new clothes towards the end of the treatment, because all the clothes were too small. After that he would just urinate a lot and one week after we got back the Muli that we knew, the small one. We did everything we could. He had the Acutan as well, which makes the skin very dry, and we finished the protocol. We were very hopeful and very happy.
In the last scan, before we were scheduled to move to the follow-up part, we saw a relapse: one relapse in the Humerus bone. He relapsed.

–> The protocol that you were treated under, is it an Israeli protocol or a European protocol?

It’s a European protocol. We had few randomizations, no one immunization. Back then you had two options of drug / chemotherapy before the transplant. We received the CEM, but it was not the best. The BuMel is the best, and not everybody is getting the BuMel.

–> Where were you treated in Israel?

Jerusalem Hadassah Hospital.

–> And then the second hospital?

Schneider Children Hospital. In Hadassah Muli was the first kid to get the immunotherapy.

–> So, the immunotherapy is an experimental treatment?

Everything is experimental. Every protocol has some randomization so it’s all experimental because you have the immunotherapy with or without the IO2. You have few randomizations to the protocol.

–> How many children do you know in Israel that got the same treatment as Muli?

Well it depends if we are referring to all exactly the same or just the same SIOPEN protocol. Muli was I think one of the last SIOPEN chemotherapy before the transplant. Today everybody is getting the BuMel, but I know many children are getting the SIOPEN treatment.

–> Who is the best doctor you could recommend parents in Israel to visit?

We have been in two hospitals in Israel: Hadassah and then Schneider, and then we’ve returned to Hadassah.
I think the doctor who knows the most about NB is the head of the Children Oncology department in Schneider. Dr. Itzhak Yaniv. That being said, we decided to go back for treatment to Hadassah in Jerusalem since it was easier for Muli. the protocol was the same, and one can always take a second opinion. We got a second opinion with Schneider at the beginning, but I don’t think there’s much different between these two hospitals.
The treatment in Hadassah was much smoother for us. The day care was much more convenient for us, and the hospitalization as well.

–> How long was the treatment in Israel, from the beginning and until the relapse?

One year and one month.

–> After one year and one month of treatment in Israel, there was the relapse. Muli was, by then two years and five months old. What’s next?

We saw the relapse and I wanted to do the MIBG therapy because I read about it a lot.
There was a misunderstanding, and we didn’t do the MIBG therapy in Israel because it’s not a treatment we could do in Israel, and we didn’t really know how to get it. They gave him chemotherapy – two TVC and two TVD, plus local radiation, and Muli was clear at the end of the treatment, so Muli was not approved for the MIBG therapy.
When you are clear, there’s a paradox, because everybody knows that you shouldn’t treat a child with no evidence of the disease (NED), but it doesn’t mean that for 100% there is no disease; it just means that you can’t see the disease, so it’s like you have minimal disease and it’s better to treat when you have minimal disease. Everything is more effective. The problem is that the clinical trial, most of the clinical trials are usually open for childrenwith signs of disease, so there are very few treatments that you can have at this stage.
For Muli we knew that the prognosis was very bad. Muli was high risk with one relapse. In all the papers, the five-year survivor rate after one relapse of Neuroblastoma practically zero. I wanted him to get the treatment, so we went to get the treatment that was open for us – which was the vaccine therapy, in Hershey hospital in Pennsylvania U.S.

–> After the first cycle ended and they saw the relapse, what were the considerations, and how did you make the decision to go to Hershey, from all the options? Where did you apply, and what was the process?

Well there was not so much applying, because Muli already got antibodies. We had two options: a treatment in Sloan-Kettering (NY) and the one in Hershey (PA).
The CH14.18 that he already got during the treatment was an anti GD2 (antibody treatment). The GD2 is something on the cell of the Neuroblastoma, and the antibodies were an anti GD2. The Sloan-Kettering antibodies were also anti GD2, so we went for a different approach, in Hershey.
There weren’t so many options because Muli was clear of diseased, and for the research purpose it is always better if you have an active disease with evident signs, so you can measure everything.

We were recommended by our doctors to stop everything and enjoy the time we have left, so we didn’t have a lot of choices, but we decided to continue the fight and we moved to Hershey.

–> Was there any other place in the world that you checked?

We checked, yes, we checked a lot of others, but there was no trial for children without evidence of disease.

–> All the other places were accepting only kids with evidence?

Yes. You may have more options when you have evidence, but these clinical trial are closing and opening all the time. I wanted to try a vaccine trial for him, but it was closed.
It’s a matter of timing. Timing plays a big role in the options you get to choose from.

–> For better or worse, the only option you could find was in Hershey.

Yes.

–> Did you check also other countries, other than the U.S?

Yes. We checked in Europe for MIBG therapy, but we already got the European protocol, so what they recommended was chemo. Muli had the fungus infection during his treatment, from which he almost died. He had three surgeries in four days to treat it, and a lot of treatment after that, and we could not give him any more chemo, so it also closed some options for us. Chemo is not curable for Neuroblastoma high-risk relapse.

–> Is the Israeli protocol equivalent to the European protocol?

Yes.

–> And this is why it made less sense for you to go to Europe?

Yes but also because in Europe there are not so many clinical trials like in America. He could not get any more chemo at that time and the European protocol is all about chemotherapy.

–> Tell us about the second phase in Hershey: after you got there, how did you get along, how did you make the connection? Tell us also about the treatment itself.

The bureaucracy was very fast. Hershey was not used to having international patients; I think Muli was one of the first. We got a paper saying “for the Israeli patient”. It was funny — there’s no international department in the hospital or anything.
It was very, very fast, and they were very, very nice and helpful, and when we decided and they checked everything and say that we can only after we were there with Muli. For ten days, me and my husband, we made a peripheral blood, like before the bone marrow transplant, they harvest peripheral cells. We take the cells and after we go back to Israel and for three weeks and they prepare the cells for the vaccine. After we move, we have a daughter, we move together, we lived in the Ronald McDonald house for five and a half months, and Muli gets the treatment.
It’s four courses of treatment.
There is one week of chemotherapy, low-dose Decitabine chemotherapy, two injections. In weeks number 2 through 4 it’s only blood tests. Everything was outpatient, unless he had a fever or neutropenia or something, but it’s not lowering the count so much.
It was for courses like this, and we had one delay because the count was too low to begin the Decitabine.
It was fine. It was an easy treatment – only the shot were not so nice.

–> So it was five months?

Yes. Roughly between the age of three and three and a half, approximately, because he had chemotherapy in Israel. After they finished and after they saw the relapse, they gave Chemotherapy — two TVD and two TVC. Plus local radiation.

–> Local radiation. That was after the relapse?

Yes. Then, he was clear, and then we got to the Decitabine treatment.

–> Tell us a bit about the treatment in Hershey. Was it biological? How did it work etc.

There’s two parts. There’s the Decitabine, the chemotherapy, with a very low dose, which just felt like fine-tuning of the white cells and red cells to increase the immunity response. They took some cells from Muli and they worked with them in the labs, and we injected them back into the body. The body does not fight these cells because it’s cells from the body, and it showed in the lab that the cells fight against Neuroblastoma.
For us the treatment was good and NED – almost six months after, he was continuing to stay clear. For us, it was very good; we were very happy. It was hard to think that he will still be clear. It was good.
He was at the age of three and a half when he finished.

–> The tests, what are the tests they did at the end?

We did MIBG in the middle and at the end, and we saw there was no relapse.

In the MIBG Test, as oppose to the MIBG treatment, they inject something radioactive. The cells are absorbing it – it’s radioactivity plus iodine, and the Neuroblastoma cells absorb iodine. After that the child is lying in the machine and a radioactive sensor scans the body and you can see if there are any spots.

–> It’s like PET-CT?

It’s exactly like PET-CT, but PET-CT is with glucose and the Neuroblastoma cell is avid to iodine. So MIBG test is like PET-CT, but they switch the glucose with iodine.

–> Did you have insurance for this clinical trial?

NO. We paid out of pocket in Hershey Medical Center, and I think it’s important for people to know the costs, out of pocket. The Decitabine treatment was almost $60,000.

–> That’s for the six months in Hershey?

Only the medical treatment, yes – not including flying back, hotel, food, car etc. Only the medical treatment. All the other flights in the U.S, the visits, the meetings with the doctor, we had to pay for each of the meetings.

–> Why was the Hershey treatment not covered by your insurance in Israel? Everyone in Israel has medical insurance from the state, and I assume that your treatment in the Israeli hospitals was all covered. Why wasn’t the Hershey treatment covered by the insurance?

Because it was a medical trial, and the only thing in Neuroblastoma that we knew that the medical insurance in Israel would cover only a surgery in the case it cannot be done in Israel, or MIBG treatment. At that stage, Muli was not a candidate for the MIBG treatment because he was without any evidence of disease.

–> After five months in Hershey, the MIBG test showed no evidence of cancer. What’s next?

After the treatment in Hershey, before we came back to Israel, I wanted Muli to be in some of the computers in the States because of bureaucracy. During the first relapse, the time it took us to get any answers was too long and I didn’t want to spend any more time, if something should happen again.
We got a second opinion meeting at CHOP (Children Hospital Of Philadelphia) with Dr. John Maris. He had a medical appointment there, so he was in the computer already.
Also, I sent many e-mails to the head of five of the most important doctors for Neuroblastoma who I knew about.
We also went to UCSF Medical Center in San Francisco. We flew all the way back there because the head of the entire COG (Children’s Oncology Group) was there.
It was a thing that was very important for us to do, to try to skip all the bureaucracy, in case there’s going to be another relapse because in Israel where we live, if there’s a relapse, you speak to your doctor and the doctor speaks to another doctor and it takes time which we don’t have. So now, if the child is already in the computer, you can speak directly to your doctor which is overseas.

–> Amazing; genius! For one visit to the doctor, you’re already in the hospital’s system. You now know the doctor, and from now on you have a direct channel of communication. Wow!

Yes, it’s a non-writing contract. Your child is a patient of him, so you can be in contact with him.
It took almost two months to have the appointment in CHOP, and one month to the appointment at UCSF. It’s time that you don’t have when your child relapses. It’s completely different to do it when you have time. Also, I sent a few emails and I had some calls with other doctor. I knew that there’s going to be a treatment which was about to open with Dr. Sholler for maintenance treatment. I was looking for a magical drug that will keep Muli clear, because Muli is without any evidence of disease.
So I was at the medical conference in Texas, and I spoke with Dr. (Giselle) Sholler from Michigan, Grand Rapids. Helen DeVos Hospital. We saw that the trial was not yet open but I was in touch with her, and ten days after I came back to Israel I flew with Muli to Michigan to be with seven kids to be enrolled in a new treatment of maintenance for Neuroblastoma, the DFMO trial in Grand Rapids, Michigan.

–> Thanks to your visit to the conference in Texas..

Yes, I was there because I knew they were going to speak about the DFMO trial. It’s the reason I went to the conference, and to meet with her and to know her. I wrote her an email before.

–> You established contact, and then once you finished the tour in the U.S, you went back to Israel and ten days afterward you came back to Michigan for this trial.

Yes.

–> Tell us, please, about the Michigan chapter.

The drug is called DFMO and is for maintenance. The purpose is to prevent any relapse. It’s a drug that you take twice a day orally.
One course of treatment is one month, and every three months you have an MIBG scan, a CT scan, and any other special tests you may need.
The periodic tests (blood etc.) you can do in Israel however you need to be in Michigan to get the drug because they cannot ship the drugs overseas. They need to see you, check on the kids, and after that you can fly back with the medical drugs. This treatment was very easy on Muli. We didn’t see any side effect.
After nine months he relapsed, so we stopped the treatment. Usually, the protocol for this treatment is two years.

–> Where was the relapse?

There were two sites of relapse: one in the first rib: a bony relapse with a little mass around it, and one in the leg. Only bones. It metastasized in the bone.

–> Who manages the DFMO?

Dr. Giselle Sholler in Van Handel Hospital in Grand Rapids, Michigan.

–> Were you happy with the treatment in Michigan?

Yes, very happy.

–> What happened after the relapse? I assume the trial in Michigan had to stop?

Yes. Before the relapse we were always thinking and discussion what we will do in case of a relapse, because we knew that when the relapse happens you don’t have time. So we already knew and the doctor knew as well that in case of a relapse we want to do an MIBG therapy. I’ve been in touch with CHOP, where my child was already in the system, and with UCSF. The treatment in both hospitals is similar so we wanted to go to CHOP because it’s much closer; Philadelphia to Israel than San Francisco, but the bureaucracy there was too long. So eventually, after one month we began the treatment in UCSF (University of California, San Francisco).
In CHOP the bureaucracy took too long. They asked for many things and it was just.. We didn’t have the time to spend, so we flew to UCSF. It was a bureaucracy decision between the hospitals because the treatment would have been the same.

–> How long have you been in Israel before you went to UCSF?

One month. He got a little dose of some chemo just to prevent it from spreading anywhere else. We also needed to harvest stem cells since in order to make the MIBG therapy, you need to have stem cells.
If you want to make it a full dose of MIBG therapy, you need to have bags of stem cells, so we harvested some stem cells. We’d already harvested in the past, but after MIBG therapy, you cannot harvest any more stem cells, so we harvested another bag of stem cells. And then we flew to San Francisco to do the MIBG therapy.

–> Tell us a bit about the MIBG therapy please.

The MIBG therapy is like the MIBG scan, but it’s a much higher dose of radioactivity, so it just will burn the disease. It will go to the disease and burn it. The child is radioactive after the infusion so you cannot be with him for about one week. He’s in a special room and there’s a shield, a special led shield. If you need to help him with urinating or changing diapers or anything else you can go to the other side of the shield for a short period of time but normally you would stay outside the room. It was not an easy week for Muli, but thanks to an iPad that we got him it was fine. If you have a child that doesn’t know how to use an iPad and you are about to do an MIBG therapy, teach him how to use an iPad! Because we wrapped it a lot and he was just playing with the iPad for hours. It was very good.

–> So, the MIBG treatment is basically trying to burn the cancer cells by identify them with the iodine and then burn them with the radiation?

Yes. They have the iodine plus radiation. They inject them together. It’s going everywhere in the body, but it only stays in the tumor.
It’s basically a radioactive treatment. The tough part about MIBG treatment is that the kid is radioactive and you cannot get next to him. He was for almost a week alone in a room. Parents can go back and forth for short periods of time. They don’t do the treatment if you don’t have two caregivers. We took three caregivers: I, my husband, and my mother-in-law. When you are three caregivers you can win more minutes inside, because everyone has an amount of minutes. The hardest part is only for the first three days, after which you can basically go back and forth. It’s not so radioactive;
All in all the treatment was fine. It’s not a painful treatment.

–> How many cycles of MIBG treatment?

You can do two MIBG cycles. After the first one we have done we saw that Muli was NED, however we decided to do another one. We weren’t sure what to do, but every doctor that we asked told us that if the disease responds now for MIBG, it’s not sure that it will have a similar influence in the future however on the flip side it may be good to ‘keep’ the second round as a backup measure in case another relapse happens.
We were certain that there were cells that we didn’t see, and decided it would be better to give him another cycle and try to kill it. So we did another cycle.

To summarize the UCSF chapter: we have been for one month in San Francisco. Starting with the bone marrow biopsy, CT scan and MIBG test for the purpose to get into the trial. When Muli was in, we did the trial. It was one week in the room. Then we waited for two weeks to get the stem cells back in America. We chose to stay there to get the stem cells in San Francisco because in Israel, nobody gets MIBG therapy and we didn’t want to fly with a child overseas if there was any allergic reaction, any side effects – we wouldn’t have known what to do with him. After they gave him the stem cells back, we flew back to Israel where we did blood count twice a week.
In Israel he gets platelets and whatever else is needed. After another a month and a half we flew back to UCSF and we made an MIBG scan (Not therapy) and we saw that there is no disease left, we decided then that we will do another cycle of MIBG therapy to ‘consolidate’. Again, we stayed one month, and we flew back to Israel where he gets blood count, platelets and whatever he needs.

And now we came to Memorial Sloan Kettering Cancer Center (MSKCC). We made the scan on purpose to get him into another study, and we saw that Muli is still NED 🙂

–> How old was Muli when you finished the second MIBG?

Four years and four months.

–> The MIBG treatment; who was running it and what can you tell other parents about this treatment?

Dr. Katherine Matthay was our doctor. A very, very good doctor, very nice. We stayed there in front of the hospital in the family house. It was very nice because it was just in front of the hospital so it was easy for us to go back and forth.

–> Tell us a bit about the Memorial Sloan-Kettering chapter.

We just began, so we don’t know a lot, but we hope to do the mouse vaccine or mouse antibody, one course, and see if we can treat the HAMA (Human Anti-Mouse Antibodies).
They treat the antibody against the antibodies, so then if you have HAMA you cannot continue the treatment but you can lower the HAMA. We will see; we don’t exactly know. The purpose is to make some antibodies, whatever we can, and then to do the vaccine trial.

–> What is HAMA?

HAMA stands for Human Antibody Against Mouse Antibodies.
It’s the antibody that your body is doing against the antibody that we’re trying to give you.

–> They’re going to take something and put it in mice?

They already have the antibodies and they give it to you, but if your body is making antibodies against the antibodies that they try, you cannot treat the disease.
He will get on course, and then we will try to manage it. And if no we will go straight to the vaccine. If you get any other antibodies before, you will get antibodies before and after.

–> At Memorial Sloan Kettering, they accept patients without any evidence of disease?

Yes, after relapse. After a relapse, you can get this treatment.

Lessons learned

–> Looking back, in retrospection, if you could go back in time, to which point in your amazing journey would you go, and what would you have done differently?

I would have harvested more stem cells in the beginning, before any treatment, because it’s like gold down the road and it’s very different to harvest cells after transplants. I would definitely try to harvest more cells in advance. I think that’s the only thing that I would have done differently. That’s the most important thing.

–> May a doctor have any objection to doing it?

No. In Israel, we harvest much more cells.

–> Didn’t they harvest the maximum possible?

No. They harvested just for the transplant, but now they know that it’s important for the future. If I could go back, I’d ask them to harvest much more.

–> What would you advise other parent who are now starting to deal with Neuroblastoma in a very young child?

I think it’s important to know exactly what your child is getting, and to check what works and what is available even if it’s not your field.
You need to know what medicines and procedures should come and check that it’s coming. It’s important because there are mistakes in the hospital all the time.
Also, it’s important to know what is going to be your next step, hoping you don’t really need to use it but to know, because when a big mess happens like a relapse you don’t really have the time to think. I think it’s important to know who the best doctor is. If you can be in contact with them, it’s important.

–> For a parent who is just now starting the Neuroblastoma journey, please mention a couple of names and hospitals that you recommend he should get in touch with.

In CHOP (Children’s Hospital of Philadelphia), Dr. John Maris and Dr. Yael Mossé.
In UCSF (University of California, San Francisco), Dr. Katherine Matthay and Dr. Steven DuBois.
In Hellen Devos hospital (Grand Rapids, Michigan), Dr. Giselle Sholler.
In Chicago, Dr. Susan Cohn.
In Boston, Dr. Lisa Diller.
In Israel: Dr. Iris Fried in Hadassah and Dr. Shifra Ash and Dr. Itzhak Yaniv in Schneider.
There are others which I don’t know.

–> Should a parent get in touch with all of them or only some of them?

It depends. The treatment you can have in CHOP, in Boston, in San Francisco and in Chicago is under the same protocol. So, it’s not important to know everybody, However sometimes it made the difference for us with the bureaucracy and the time frame you can get your child into one of the trials.

–> Tell us a bit about the side effects of the treatment in Muli.

Muli has very low side effects, no real problems. Despite all the chemo that he gets, it’s completely fine. The only thing is, his blood count needs to recover after a huge treatment. That’s the only side effect. For example, he needs to get platelets. But it’s a matter of time and it will pass. Everything that we can have in my pocket and an able to give to him I don’t really care. It will pass.

–> How about growing, the radiation effect on his internal organs?

Nothing, nothing, nothing, nothing. We are lucky.

–> How many surgeries did he undergo?

One big one for the removal of a tumor. He had a smaller one for the removal of the fungus. He had port insertion. Three surgeries. He also had biopsies, but only one big surgery.

–> Did you ever use alternative medicine?

Yes. Anthroposophy medicine, in the beginning, and also for the side effect we used reflexology for the appetite and the nausea.

–> Anything you can recommend? Did you see any evidence?

I think the reflexology was helping for the appetite.

–> How many kids do you know that had a similar journey to you?

Nobody.

–> How many children with Neuroblastoma do you know?

In Israel about Fifteen or so. Here in the U.S I know many others.

–> Could you please mention websites and sources of information that a parent could use?

NIH (National Institute of Health): For the clinical trial, there’s a list of all the clinical trials. I think it’s an important site. That’s our main source of information for clinical trials.

–> Do you know of any communities or Facebook groups that you can recommend to parents to check out?

There’s a Facebook group for Neuroblastoma, and there’s also a list in the INRC, a very good list of emails. If somebody is sending an email it goes to all the people. You respond and you can see. It’s very good. It’s www.BlastNB.com and they have all types of cancer, not only Neuroblastoma. You can choose what kind you want to be in touch with. This can enable a parent to get in touch with another parent of the same type of cancer.

–> How did it affect the family?

It’s hard. It’s very hard. It’s not what we planned. We’re not making the career that we wanted. We are not with our friends and family. The life is completely different.

–> And you have another baby?

Yes, we have two children.

–> How old is the younger baby?

One year and four months.

–> So he was born into..

Yes. When I flew back when we were in Hershey, I did the delivery and came back.

–> Thank you very much for sharing.

Thank you!

 

Search and stay up to date

Using GoldenFeeds innovative search engine we enable our parents to stay updated with information about their child’s specific type of cancer.

Here is how it works:

  1. Parents can submit specific terms to be searched by GoldenFeeds search engine. 
  2. After a few days you will receive an Excel file with the first 150 results from the web (same as if you would search Google)
  3. Go over the list and highlight only the sources which you find most trustable and relevant to you.
  4. Send us back the filtered list and GoldenFeeds will now search, every week, just the selected websites which you highlighted as most important.
  5. Once a week we will upload the search results (for your selected list of websites) here on this page. By an easy comparison you will be able to track right away any new pages on the web about the type of cancer you are dealing with.

Have a Question? Contact us

This service is sponsored by GoldenFeeds at no cost for our community.

7 First Steps When Your Child Is Diagnosed

If your child has recently been diagnosed with cancer, you must accept the fact that your life will never be the same. What you are about to go through is a new, unfamiliar, long and emotional experience. Difficult as it is, you must get over the initial shock and start to take action. Keep your thinking positive at all times and begin to prepare for the uncharted waters you are about to sail through. Now is the time to draft family and friends: it’s no time to be shy and they want to help. Let them! Assign tasks which will help you focus on your child’s most important needs and prepare the ground for the tough experiences ahead.

You must know that with cancer it is impossible to foresee what will happen at any given day, at any given moment. You must be available as parents first and foremost to see to the needs of your child, both medical and psychological. You must be prepared to be active participants with the medical staff on all medical procedures and treatments. All the other minor things, leave to friends and family.

Here are seven steps that parents should consider as a starting point:

  1. Choose a spokesperson: A close friend or family member who will be the main contact between you and the rest of your friendship/family circle. This spokesperson will accept all the phone calls of people wanting to know what is new and how is your child doing, and will coordinate visitors traffic. For example, when a friend wants to come and visit you but is not sure what to bring on a visit, what food if any is needed, when is a good time to visit etc. Keep in mind that your communication to your world does not end with you sharing the cancer diagnosis, in fact you will find many concerned people attempting to communicate, which may burden you more. Start a Facebook page where you can share updates and photos and where your friends and family can comment and show their support.
  2. Learn about the disease: It is incumbent upon you to research and study everything you can about the disease your child has and the treatments offered. This is the most challenging yet most important advice you will get. As parents we may never know as much as the doctors, but we must know enough to ask the right questions and understand the answers, in order to negotiate the best treatment for our child.
  3. Appoint someone to do research about your child’s specific illness. See where the experts are and what they recommend as treatment (the internet is a great resource). Use those experts for second opinions, as consultants, and see if the treatments your doctors recommend are aligned with those of your consultants. If not, understand what the differences are and WHY are there differences. Keep in mind that with juvenile cancer often time is critical. Since it could be that the best treatment will be available away from home, you must look for it immediately or as soon as possible after the initial diagnosis.
  4. GET A SECOND OPINION! ALWAYS! ALWAYS! Send biopsy to an independent third party for a second opinion. Make sure that the opinion is not just on the original diagnosis but on the protocol of the recommended treatment as well. A second opinion is crucial in order to (1) prevent your child from getting treatment for the wrong type of cancer, (2) avoid losing valuable time if you are on the wrong track, and (3) tailor the best treatment to your child’s specific condition, as different children may respond differently to the same treatment. Remember: Any good Oncologist would welcome second and third opinions. Additionally, You should always keep a full medical file of your child.
  5. Take charge of the discussions with the doctors and stay engaged and invovled with the medical staff (doctos and nurses). This will allow you better communication with the staff and sometimes you may actually prevent mistakes such as dis-communications or misunderstandings between the doctors and the nurses. You are your child’s gatekeeper.
  6. Contact your Insurance: Appoint someone to be the point man for the insurance company, to find out what is covered and what is not. Find out how much they will cover for treatment that involves travel etc. What’s the procedure for new and experimental treatments as well as other needs that may arise during treatment? Keep in mind that right now, at an early stage of your journey, that might not necessarily seem relevant but you should be prepared if later it becomes so. Insurance companies are generally huge bureaucracies and travel for cancer treatment brings out the most bureaucratic in these companies. This is a classic example of something you can hand off to a friend or relative to do, so that you can focus on caring for your child.
  7. Chores: The last thing you should be thinking of is shopping, cooking, laundry, cleaning etc. However, your sick child should have healthy food available and a clean environment to live in, especially when his/her immune system is weakend. Your friends and family can be a great resource for you to utilize for these things. Ask a family member to filter your mail and take care of your bills during this time so you won’t find yourself suddenly disconnected from the grid. Utilize them, so that your small daily issues do not become big issues.

It’s a long journey. Stay strong. Stay positive. Do your best. Be proactive.

Â