Cancer advice from parents of children diagnosed with Wilms’ Tumor.

  1. Partial nephrectomy (nephron-sparing surgery) its an option that needs to be explored, the surgeon will try to save some normal kidney tissue, if possible. The surgeon may remove the kidney containing the most tumor with a radical nephrectomy. In the other kidney, the surgeon may do a partial nephrectomy, removing just the tumor and a margin of normal kidney around it. Another option might be partial nephrectomies on both kidneys. Because Wilms tumors are rare, few doctors outside of those in children’s cancer centers have much experience in treating them.
  2. In the United States, surgery is the first treatment for most Wilms tumors. In Europe, doctors often prefer to give a short course of chemotherapy before the surgery. There seems to be no difference in the results from these 2 approaches.
  3. Top Surgeons in the field include:
    1. Peter F. Ehrlich, M.D., MSc from University of Michigan:
    2. For Nephron-sparing surgery Andrew M. Davidoff, MD from St. Judes Children’s Research hospital:
    3. Daniel von Allmen MD from Cincinnati children ’s, Andrea A. Hayes-Jordan, MD from MD Anderson Cancer Center.
  4. Medical Oncologist Marcio H. Malogolowkin, M.D from UC David Health System:
  5. Radiologist Thomas E. Merchant, DO, Ph.D. from St. Judes Children´s Research hospital:



  • If your child is diagnosed with this condition, do not prod or push on the child’s belly area. Use care during bathing and handling to avoid injury to the tumor site.
  • Make a list of all medications. Write down questions to ask your doctor.
  • Call a healthcare provider immediately if there are symptoms of tract infection (fever, pain during urination.
  • Use non-steroidal anti-inflammatory drugs only under medical supervision. Since they can cause vasoconstriction (contraction) of the renal arteries and decrees the blood supply to the kidneys.
  • “ The internet is a great place to find this information. But you do need to be careful. If you’re not, you could fall down the rabbit hole, the following link after link and get completely overwhelmed.”

Intra-arterial chemotherapy for Retinoblastoma.

What is intra-arterial chemotherapy? 

Intra-arterial chemotherapy refers to a novel treatment that consists in delivering the chemo directly into the artery feeding the eye, because of this doctors can use much smaller doses of chemo drugs (less than 10% of the doses used for systemic chemo). Therefore, there are significantly fewer side effects from the chemo.

Did you know? 

  • A thin catheter, no thicker than a strand of angel hair pasta,  is inserted into an artery in the thigh. The procedure is extremely delicate.
  • Intra-arterial chemotherapy can be used as the first treatment or for recurrent retinoblastoma.
  •  It is indicated in unilateral retinoblastoma (one eye involved) when children are 9 months or older and if there are no signs of cancer outside the eye (moderate or advanced disease). For minor retinoblastoma, less invasive treatments can be used.
  • Younger babies receive whole-body chemotherapy instead of intra-arterial chemotherapy because they have very small blood vessels.



  • In 1945 The treatment of intraocular retinoblastoma was first performed by Algernon B. Reese.
  • During 1968 Other investigators including Kiribuchi in Japan experimented with local delivery of drug to the eye.
  • In 2004 the idea was revisited by Yamane & Kaneko from Japan.
  • In 2006 the technique was adopted and revolutionized in the United States.


The Japanese technique of ‘selective ophthalmic artery infusion’ was further developed into ‘direct intra-arterial (ophthalmic artery) infusion’ under the pioneering work of Abramson and Gobin in New York, NY at Memorial Sloan-Kettering Cancer Center and New York-Presbyterian Hospital/Weill Cornell Medical Center under an institutional review board approved-protocol that began in May 2006. Abramson’s initial report on the technique was groundbreaking as it was the first truly selective delivery by direct catheterization of the ophthalmic artery which allows rapidness, efficiency, and safety in young children with intraocular Retinoblastoma. 



  • David H. Abramson M,D Ophthalmic Oncologist, Chief, Ophthalmic Oncology Service, Department of Surgery at Memorial Sloan Kettering . Expert and pioneer in the field of intr-arterial Chemotherapy.
  • Y. Pierre Gobin M,D director of interventional neuroradiology at the Weill Cornell Brain and Spine Center. Expert and pioneer in the field of intr-arterial Chemotherapy.



If you want to know more specific details such as: what is IAC, how it is done, classification and many other aspects, here is a useful video(9.34 minutes) of one of the most renowned groups that treat Retinoblastoma (Wills eye hospital).





Understanding Retinoblastoma (Video).

In this video, she gives a brief review (3:34 minutes) of Retinoblastoma from diagnosis to treatment in a very clear and general way. We recommend you to watch this video for a general understanding of the disease. Some parents, while going through the process like to review the information to increase their knowledge and understand again some details, also to share with family and friends in order to generate awareness.

Carol L. Shields, MD, Co-Director of the Wills Eye Oncology Service in Philadelphia, is one of the most influential and experienced doctors in the field of Retinoblastoma, some parents from around the world had recommended her as a great doctor in the treatment of Retinoblastoma.

If you are suspecting that your child has Retinoblastoma, and this is your first contact with this information,  you can follow her advice: Visit your local pediatrician.






On being brave.

Having your child sick is a very scary thing, in this Video Smara and her family shares a very deep story about their journey after being diagnosed with Rhabdomyosarcoma. It started with a bump on her leg that her mom detected during a bath, she underwent to 47 weeks of chemotherapy and an amputation. For them, community support was a huge difference, don´t be afraid to ask for help, you are never alone and there are tons of families and friends that can guide you through this process.

Smara teaches us a great lesson about Being brave: ” You might think that being brave is doing something that’s really hard but it’s not…, it’s being scared but you do it anyway”

More about Chain Lifeline: Chai Lifeline was a community-based summer camp program for children with cancer and today is one of the preeminent international health support networks supporting seriously ill children, their families, and communities with emotional, social, psychological, and financial assistance to families living with pediatric illness or loss.



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: 

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:

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
  • 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: 


  • 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:

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.
    • 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: .
  • 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:



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).




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:


Link for more information:



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

Natural Nausea Solution for kids

Your child is suffering from Nausea?

We know that in order to prevent or decrease Nausea, a doctor may prescribe anti-nausea meds (such as Zofran, Ondansatron, Emmend etc.) which you should give a couple of days BEFORE a chemotherapy treatment cycle.

However, nausea can come and go also long after chemo has ended and if you do not want your child to take such meds frequently, here are a few natural remedies which we gathered from our parents’ community, to ease the nausea:

  1. Popsicle (water base and NOT dairy)
  2. Watermelon
  3. Almonds
  4. Lemon (a glass of water with a lot of lemon in it)
  5. Medical Cannabis drops (available in some countries and states)
  6. There is also naturopathic (plant based) medicine, which any naturopath can make and which contains the following:

Zingiber off. 30%
Alpinia off. 20%
Elettaria 20%
Mentha piperita 15%
Matricaria rec. 15%
Use: 60 drops 4 times a day. can drink with water or juice.


Remember, what helps one child may no help another, therefore you should try different solutions to solve the problem.

If you know of any other remedy, please send it to us and we will add it to this list.

MedulloBlastoma (2 year old girl)

Little Emily has been battling MedulloBlastoma for the past year. Diagnosed at the age of one with stage 3 MedulloBlastoma, Emily’s parents faced different opinions and had to make tough choices in order to provide her the best treatment. Eventually and against all odds they have traveled from Israel to NYC for a clinical trial, not even sure they will get accepted to the trial.

If your child has MedulloBlastoma, this half-hour interview may help you save his/her life. Learn about the challenges of parents dealing with brain tumors, including the medical, logistic and financial aspects.


[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