Gali has been battling Medulloblastoma for the past 4 years. Diagnosed at the age of 2.5 with stage 3 Medulloblastoma, Gali’s parents faced different opinions and had to make tough choices in order to provide her the best treatment. Eventually, they have traveled from Israel to L.A and from there to NYC, balancing between the recommendations of their doctors in Israel and in several different institutions in the U.S.A on one hand, and different treatment protocol on the other.
If your child has Medulloblastoma, this one-hour interview may help you save his life. Learn about the challenges of parents dealing with tumors in the brain & MNS of their 2.5-year-old daughter, including the medical, logistics and financial aspects.
My child’s name is Gali, now she is six years old.
When she was diagnosed she was two years and four months old.
She was diagnosed with medulloblastoma stage 3. She had a brain tumor in her small brain and then we also realized that she had some tumors around the back, on the spinal cord.
The first sign we noticed was that her eyes went inside, in what is called strabismus. We took her to an eye doctor who said immediately that she had fluid in her brain and on the same day we went to the hospital and did an MRI of the brain. Two days later she was operated on and they were able to remove the entire tumor from her brain.
The operation was done by Dr. Shalom Michovic of Schneider hospital in Israel. He did a great job, and we thank him today because Gali came out of the operation after eight hours with no neurological damage at all, which is practically a miracle. When you have to remove a tumor from the brain it’s very dangerous. The healing process for the operation took us about a month.
Since she also had some tumors on the spinal cord, of course, this was not enough and we also had to do something to make sure that it will not come back, so we started chemotherapy and a long process of treatment which lasted about one year.
We were treated in the Schneider Hospital for Children in Israel. We had a treatment that started with chemotherapy because she was too young to get radiation, although in this type of tumor radiation is considered to be more appropriate or more successful, we had to make sure the radiation will not hurt her too much because of her young age by giving controlled doses of radiation. So, we went through a protocol of the Children’s Oncology Group (COG). I don’t remember the exact number but the protocol included a high dose of chemotherapy and three mini-bone marrow transplants. The whole process was about eight months.
We consulted several doctors before we started and we understood that chemotherapy is something that you can do everywhere actually because it’s like a recipe of how to do a cake and you don’t have to be a specialist. You just have to give the medicine and hope that it works. It’s not something special and we talked with all the doctors abroad, we talked with at least three doctors and they all confirmed that this is a good protocol, so we gave the okay to do this protocol.
After eight months in Israel, we modified the protocol. We added Methotrexate, a very strong medicine, which is not part of the protocol. The doctors in Israel recommended Methotrexate even though it’s not in the protocol. It is in the head start protocol in the United States, but not in the COG protocol. Due to her tumors on the spinal cord, we had to take one step further with the chemotherapy and we also needed to wait more before giving her radiation because she was too young and all the doctors said that three years old is the minimum age to start radiation.
We actually finished the bone marrow transplants when she was exactly three years old, and then we did another MRI to review the results and luckily the brain was still clean however the tumors in the spinal cord remained. Even though they shrank a little bit, and they were like spots around the spinal cord they, unfortunately, didn’t disappear, and you can’t operate on the spinal cord. The spots were in many places. So we were at a time when we had to choose what to do next.
The doctors in Israel recommended that we go straight to radiation and because there were still spots on the spinal cord. They said, “You have no other choice but to give the full dose of radiation”.
She is three years old. It’s not the best, but that’s what you have.
We were also in touch with several doctors in the United States and Canada. We had the impression that it’s not that easy to make a decision so I decided to go and meet with all these doctors. The first doctor who I’ve met, who followed us through the entire process, was Dr. Jonathan Finlay from The Children’s Hospital of Los Angeles (CHLA). He’s a great person and a great doctor. He’s also the person that invented the Medulloblastoma head start protocol for infants. I would say his goal in his life is to find a cure for brain tumors in children without using radiation, and he’s doing all that he can to make this possible. I went to see him. I went alone, without Gali, with all the information that I had, with the MRIs, with a summary of everything, and all other information about the entire situation.
Approaching all the doctors was a process. In some hospitals we had to send all of the information beforehand, some were less formal, some required going through an international department, and with others, we went directly to the doctor. With Jonathan Finlay, it was all very informal. I went to see him and he gave me the impression that although he’s really against radiation in Gali’s case we had no other chance but to give her radiation; however, we had to make all efforts to do it the lowest dose possible.
Then I went to see other doctors. The first was Eric Bouffet, head of pediatric brain tumors at the Hospital for Sick Children in Toronto. After that, I went to see Dr. Roger Packer at the Washington Hospital for Children, and then I went to see a doctor in Boston.
We gathered all the information from all the doctors and created a plan. The plan was to go to Los Angeles to have the radiation treatment. There were two main reasons why we went to Los Angeles for the radiation treatment instead of doing it in Israel: The first reason was that we got the impression that in Israel they do not have a lot of experience in radiation in such young children. It has to be really precise, on the millimeter, because the spinal cord is so thin and the brain in such little children is so small that it really is important to be precise by using people with the greatest experience, and most knowledge of physics. The second reason was that we didn’t feel that they would cooperate with us in Israel to give the lowest dose of radiation. In Israel they are not familiar with this; they only know to give a high dose or nothing.
So we went to Los Angeles where they did the radiation therapy with the lowest possible dose. It was 1,800 for the spinal cord, the brain, and 2,300 for the bed of the tumor, they call it CUYG. What professor Finlay did is that towards the end of the radiation therapy he performed an MRI to see if there was any reaction to the radiation. He saw that in a very short period of time there was a positive response, and the spots reduced in size. He said that we can stop here, so we stopped. I have to say that during the radiation treatment he also gave Gali Vorinostat, which is a biological cancer stopping or killing drug.
After the radiation therapy, our doctors thought that the low dosage wasn’t enough. So we had to complete the treatment using an alternative method.
We went to Memorial Sloan-Kettering Cancer Center (MSKCC) in New York. At MSKCC we met Doctor Ira Dunkel, head of the pediatric brain tumor department, and we applied to join phase two of the clinical trial of iodine monoclonal injection. It’s a special clinical trial that is performed for brain tumors, Neuroblastomas, and other central nervous system tumors. We had to be accepted to the trial by going through tests to make sure that Gali met the requirements for the treatment. Luckily, she was accepted to the trial, and we did it.
The treatment involves five radioactive injections directly to the brain. The radiation goes to the fluid of the brain which goes through the spinal cord. They injected the radioactive material which is attached to blood or other material from white rats which attach to tumors. The radiation was attached directly to the tumors if there were any. They still didn’t know if there were any tumors left so they had to attach radioactive material directly to them. This method avoids the long-term difficulties that you would expect from getting a high dose of radiation because this is not in the entire brain or the entire spinal cord. We completed this process. The whole trip from Los Angeles to New York took us about six months.
We later went back to Israel and continued to take three oral medications. The first is Temodal, which is a chemotherapy drug. We took Temodal for six months instead of a year because her immune system couldn’t handle more chemotherapy along with the two other medications. Vorinostat was the second one and the third one was Roacutan, which we took for a whole year.
The entire treatment after the one year of medications ended two years ago, we are still under a very severe follow-up. We do MRIs every 12 weeks because there are still some spots on the spinal cord, and they have to make sure that they don’t grow because as long as there are spots they could be left over scar tissue or tumors. If they suddenly grow, God forbid I hope it will never grow, then it means it’s something else.
The MRI results are sent to Dr. Jonathan Finlay in CHLA, and to the doctor who did head radiation to her, Dr. Kenneth Wong. They are both amazing. They continue to review the MRIs and to compare it to previous MRIs every three months. The Schneider team also waits to give us the results until all doctors review the materials. It is a long week for us but at least I know that many doctors are looking at the MRI. The fact that it’s been two years from the oral medication is a good sign, but there’s never a guarantee.
In addition to the periodic MRI, we also do a hearing test, an eye test, and an endocrine test. We have a lot of follow-up because of the treatment’s side effects and we hope that it’s over but there’s never any guarantee that it is over. We continue to pray that it’s truly over. We see some long-term effects from the treatments.
I have to give a general statement that we heard a lot of opinions throughout the process from all the doctors, and we had to, as the parents, do what we believe is right, but we didn’t know what was right. The doctors were in disagreement about the issues, so we had to make some tough decisions throughout the process.
For example, after we did the MRI, when we finished the chemotherapy, and saw that there were still spots in the spinal cord (before we started the radiation) some doctors said, that it may be scar tissue and not the tumor itself, so we did a biopsy, here in Israel to see what it was and then we found out that it is a tumor. Some doctors said not to do the biopsy, because you can’t do a biopsy for each and every spot, and if for example, you do it for one spot which is scar tissue, but then the other spot is a tumor you would’ve missed the tumor. We decided to do a biopsy, from the main part of the spot, and we found out that it was a tumor.
There were arguments about this biopsy, about the radiation treatment and about several other topics. In order to deal with these decisions that we had to make, we had a peer group of our close family, I have a cousin who is a scientist, and she helped me. We chose my father, my brother, and five-six other people that follow up with us all the time.
When I went to see all the doctors, it was five doctors in five days, I summarized every meeting with them, wrote everything they told me, and then I sent the entire summary to the peer group of the family and friends, the doctors in Israel, and the other doctors. I had everybody in line. Everybody knew what everyone else said, and everyone had all of the information. It was easier to make a decision with many people. We didn’t know if it was the right decision, but at least I knew that everybody knew what I knew. I think it really helped. I also didn’t forget what they told me. I think that the point that I was the connector between everyone is maybe one of the most important things a parent can do because many times the doctors aren’t communicating with each other.
Parents can stay inactive and passive, and do whatever the doctor says, but active parents, proactive parents, take steps to get things done. One of the things to do is to make sure that all the doctors communicate, and document everything. I think it’s really important. For the first eight months, when we were doing chemotherapy we were not very active by the fact that we made sure they give her the right medicine, and the right dosage of the medicine, and we were with her all the time, but we were not active in the parts because it was a protocol, and you had to go through the protocol. Before the protocol had started we made sure it was the right protocol, but that’s it.
My recommendation to parents dealing with situations like ours is to get prepared, meaning if you decide to go through with a protocol of the chemotherapy, it’s good. If you made a decision – do it, don’t look around. Follow the protocol, and hope for the best. Hope that when you finish going through the protocol you are done, and you can go home and be healthy and forget about it. But prepare for a situation in which something goes wrong, and you have to make a quick decision and you don’t have the time to do a research. Therefore, it would be wise if while you follow the protocol to make all the preparations that you can, find out which doctors are the right doctors to consult with, read information about the disease and its treatment, and sign up for newsletters from related health associations etc. Be prepared for the worst, and hope that you won’t need to use this information, but at least for the moment that you need to be active, which I highly recommend because even if you have the best doctor they don’t have the time to learn about your child’s disease as much as you have the time, patience, or passion to do it because it’s your child. I think it’s our duty to learn for our children. Sometimes you don’t have the capability to do it because either your English is not good enough, or mentally it’s difficult for you, so you can ask someone else from your family to do it for you because you have to be detached when you do it. When I went to speak with the doctors I said to myself I am speaking about a child, not my child. I cannot think about my child because sometimes you hear difficult things from the doctors.
When you go to speak with them they say everything, so you have to be prepared. I remember one time when I went to see the doctor I was so shocked, and because of that, I was late to the plane. It is not an easy process. You can do it alone, or you can ask someone for help. My brother, for example, joined me at some of the meetings. You can bring some of your family, or you can ask someone else that you trust to come with you, but you also have to do it because otherwise, you won’t get the whole picture.
So basically my suggestion to other parents that are starting the process now is:
Be active or proactive,
Get on top of things,
Learn about it so that you will be able to communicate with doctors,
and to get involved.
I don’t think that you have to be nagging the doctors too much or ask them to spend more time on your case because they don’t have the time, and they won’t do it. My experience is that doctors love to hear the information that you bring from other doctors. We are working with, and are being followed by Dr. Helen Toledano from the Schneider Children Hospital in Israel. She is great. Throughout the entire process, she always told me that she learned a lot from the process and that she kept all the information that we sent to her from the U.S. She wants to learn from our process, and then she uses the information that she gets with other kids. If she has something to say, she says it, if not, she doesn’t. Even though she’s a great doctor, she can’t do the same process that we had. She has dozens of other kids to take care of, and she can’t give all her focus to one child. You have to remember that she wants to do it, but doesn’t have the time. We are lucky that we can do it because we have the time to do it, and if we don’t have the capability to do it then we can use somebody else, but it’s something that is important. Also I think that cancer is an illness that is so complicated, and is so different from one form to the other that everyone has to learn about his or her own cancer because it is impossible for the doctors to have all of the information for so many different kinds of cancers because each type of cancer is a different disease. Each type of cancer requires different treatments and different doctors. Therefore pediatric cancer is not one disease but many, and you need to learn about your specific type and sub type and get all possible information and this is exactly the point. The age of the child is important as well because treating Medulloblastoma for a six-year-old child is different than treating a two and a half-year-old child. For example, if Gali was six when she was diagnosed then she would have started radiation immediately.
Regarding diagnosis: We know that it’s very challenging sometimes to diagnose cancer in children because you don’t connect the dots. Please take us through the first signs, you mentioned something with the eyes, and through the diagnosis process. How long did it take? How do you diagnose medulloblastoma?
In our case, there were signs that we could see, and signs that we couldn’t see. There were two signs that we could see. One was the eye that went inside. It happened suddenly that her eye moved inside however this could’ve been for several different reasons. The second sign was that she was occasionally falling. At first, we thought that this was a problem with her leg, but later we learned it was caused by cancer. She was two years and four months when we started to notice things. She was walking fine, and she had been walking since she was 11 months then suddenly she started to fall. It took about one week of falling before we thought that something was wrong. After one week I took her to the doctor to see if something was wrong with her leg, and then we saw the eye so I said maybe she falls because she doesn’t see very well. This caused me to go to the eye doctor immediately which was where we found everything. The doctor found the brain pressure and the tumor by doing a pupil dilation (when you enlarge the pupil), and she saw that there was pressure in the brain which means that something is wrong. She couldn’t immediately say what was wrong, and she said it’s either a brain tumor or something else, but I think she knew that it was probably a brain tumor. It wasn’t ocular pressure, but rather brain pressure that can be seen through the eye. It’s very important that in a case like this that you insist on doing the dilation because this is the only way you can see, and it only takes about 30 minutes until the pupil fully dilates. These were the signs that caused us to find cancer, and that brought us to do something.
Following the visit to the eye doctor, we went immediately to the Schneider Children Hospital in Israel. We decided to go there because I have a friend that works there and also my parents’ friends work there. So we went there, and a neurologist checked her. The neurologist also believed that the brain pressure was caused by a brain tumor. It was morning and about six hours later they did an MRI and told us that it is a malignant brain tumor. We had to decide if we wanted to stay there to do the operation or go to a different doctor because there are other doctors in Israel that operate on brain tumors.
So within a few hours of our visit to the eye doctor because Gali was falling we got the news that Gali had a brain tumor that needed to be operated on immediately.
You already knew that it was cancer, but you didn’t know what type of cancer, and I guess the doctors told you that it’s very urgent to do the surgery immediately, and now you as a parent, you started to ask questions: Where am I going to do it? Who is the best doctor? etc.
Due to the fact that it’s a brain tumor and it’s so critical, tell us a bit about this dilemma and how you made the decision that you made.
For us, it was not a very difficult decision because we understood the urgency, and we said that it is very important for us to make sure she gets operated on immediately. We didn’t think about
taking her abroad for two reasons. First, we were too shocked to think about it. Second, we saw parents there that already took their kid abroad, and they told us that the operation in the U.S. was not good, and they had to come back anyway. They recommended Dr. Michovic because he did a much better job for their kid. We didn’t have time, and we had to move fast. We also thought about the process after that, because you have to go through the operation, and then you have to go to the oncology department. So we asked my friend that is a doctor at Schneider, and we were told the following. She said that in Ichilov there is a very good surgeon, Prof. Constantini, but that the oncology department there is not as good as the one in Tel Hashomer, however, there aren’t any surgeons that are as experienced as Dr. Michovic, and in Schneider we understood that Dr. Michovic is great and that the department of oncology is also great. So we said it’s better to stay in a place where you have everything that you need. This was what we considered and this is why we decided to do it there.
There were three signs that we actually could have seen before but didn’t. I don’t know if we could have seen them, but at least in retrospect, we can. One was the fact that Gali was a very active girl, she went to all the parks, playgrounds, etc., and when she was two and two months, she stopped playing. I think a month passed from the time she stopped being active until we diagnosed her. I thought she stopped being active because at the age of two you start to get scared and everything, but that wasn’t the reason.
The other sign was that there were like two or three days that she vomited in the morning. I thought it was because she was still drinking the formula so I stopped giving her the formula, and then she stopped vomiting in the morning. It is also a very scary sign when you vomit in the morning. Since she vomited only two or three times it was not something that scared us. Vomiting in the morning is one of the signs or symptoms of a brain tumor in children and in adults. When you feel sick in the morning and vomit, it is a very bad sign. I didn’t know that beforehand. After I read about it, I understood, and when I stopped giving her the formula and she didn’t vomit in the morning I lost the chance to see it. It was about two weeks after the vomiting before we diagnosed her.
The third sign was that her head was slightly tilted.
So I would say that in Gali’s case the signs didn’t last long. Brain tumors are very aggressive, and when it grows, it grows fast. You can only see the signs when the tumor is big.
What are the methods of diagnosing medulloblastoma?
Medulloblastoma can be found by an MRI scan. If a tumor is found in the brain with the MRI a biopsy can be done by taking a sample from the tumor, or the tumor can be checked after the resection of the whole tumor to figure out what type of cancer it is.
Biopsies aren’t usually done to the brain because of how hard it is to do brain surgery. Usually, Medulloblastoma is accessible because the tumor is located in the medulla which is usually accessible. If it’s a different type of brain tumor then it may be difficult to get to. In Gali’s case we only did an MRI of the brain before the operation, and only after the surgery, we did an MRI of the spine, which was a mistake. I recommend to do both before the surgery, but I am not sure why the doctors chose not to do the full body MRI. I think it’s not in the hospital’s protocol here in Israel to do the full MRI. In the U.S. I’m sure it is part of the protocol. Only after they diagnosed it as medulloblastoma, and they knew that medulloblastoma can spread to the spine, did they do the full MRI. If it was Ependymoma or something else where you know that it doesn’t spread they wouldn’t have done the full MRI. So they wanted to identify the type of cancer before they did extra tests. I think that it isn’t a very smart thing to do even though it wouldn’t have had an effect on our choice to do the brain surgery.
Had they done the MRI before the surgery I would’ve known if the tumor was on the spinal cord before the surgery or not. Now that the MRI was done after the surgery it may have moved there during the surgery or it could’ve already been there. In many cases, also in ours, there is a challenge between the decision to do things quickly and to do all the tests possible, and in many cases during the surgery stuff happens, and you don’t know what’s caused it.
Brain surgery is very complicated, you decided to do it at Schneider with Doctor Michovic. Tell us a bit about the doctor and the surgery, how it went, the risks and the end result of it.
We met Dr. Michovic before the brain surgery. He came to meet with us in the middle of the night because they did the MRI around 6 PM, and we got the results which made us really scared so he came at about 10 PM to meet with us and to explain to us what would happen. He was very calm, he said that he does brain surgeries daily, and he was very optimistic. He said that he believes that he can remove the whole tumor. He was certain that it was malignant cancer, and he said that it’s either medulloblastoma, or ependymoma. Before he did the surgery we saw that he was very knowledgeable about everything, and then we had to get prepared.
She couldn’t have food for six hours before the anesthesia. After that, they did the operation. It is very difficult. The operation lasted for eight hours. He told us that he had to scrape the tumor off of the stem of the brain because it was attached to it, and he had to do it very gently so as not to damage anything. Damaging the brain is the biggest risk with this type of operation.
After the operation, it was difficult for her to start walking. When she finished the surgery there was a lot of fluid in the brain that had to be removed. She couldn’t stand the fluid so it was removed. Later she got sick with meningitis and then they had to take her to the hospital again to clean everything and to close it again. It took about one month before she learned to walk because she was very imbalanced. The part of the brain that was operated on controls balance in the body. Her eyes corrected themselves about a year after the surgery. She couldn’t speak after the surgery either. Before that, she said a few words, even though she never really spoke much, but after the operation, she couldn’t speak at all for at least a month. There was a regression in all of her development. This was a shock! I know about kids, her situation, that it takes them six months before they can walk, or they can’t speak, or they can’t move. I think Gali had a quick recovery, but it takes a lot of time, and you have to be patient.
After the brain surgery, Gali had a month to recover and then you started chemo in Schneider in Israel for eight months. Please tell us about the chemo treatment.
The protocol was the COG protocol, Children’s Oncology Group, for infants with medulloblastoma, infants meaning kids below the age of three years old. The protocol in Israel is similar to the one in the East Coast of the United States where they do the COG protocol. In the West Coast, they do the head start protocol and I think they also do the COG in Europe. The head start and the COG protocols are very similar with the only difference being methotrexate. Methotrexate is a medicine that is more severe, and it can cause learning and other problems in the future.
In Israel, we followed the COG protocol, but then we added methotrexate because we didn’t see a lot of progress with the spots on the spinal cord throughout the process. It’s a decision that was made during the protocol.
After about five months she finished the chemotherapy, and then she had the mini stem cell transplant which took about two months. She had a stem cell transplant because she had a very high dose of chemotherapy, but they used her own blood and her own stem cells. They harvested the stem cells before the chemotherapy, and then they gave her the high dose of chemotherapy, which killed the stem cells, and she then needed a set of three mini transplants. We had to go to do the transplant for three times, and each transplant lasted for a week. It was not like a whole month inside the room and everything like in the regular transplants.
We did some MRIs during the protocol and saw progress, but not much. After the transplant
we couldn’t see any change from before the transplant. The spots were the same size, and so the mini-transplant didn’t help, but they didn’t grow as well. After that it was stable, but we didn’t know if the spots were scar tissue or something else, or the tumor itself, so then we did the biopsy.
Before that, there was a decision not to use radiation because in Israel under the age of three they tend not to radiate. When I went to speak with the doctors’ everybody told me that they don’t give radiation treatment for the brain and spine for anyone under the age of four because it would negatively affect the brain, and they would lose their ability to be independent. We decided we don’t want to do that to her.
After the chemotherapy, we flew to the East Coast, and to the West Coast, and we consulted with a few doctors, and the decision was to give a very low dose of radiation even though she was less than four because we had no other choice. Professor Finlay was the one that told me that I had no other choice. I then understood that she would have to get the radiation therapy because Professor Finlay is usually against radiation in infants. He said to me, if I tell you to do radiation because there is no other choice then you have to do it. He said that he will make sure that it will be the lowest dose possible. He said that if you don’t do it to her then it will not end well. I then decided that him and Dr. Kenneth Wong, head of the radiation oncology department, would do the radiation treatment. The radiation treatment lasted for two and a half weeks, and it was done every day except for Saturday and Sunday. It’s all done under anesthesia so every day she had to be under anesthesia in the morning, for them to do it.
How did you deal with your insurance?
Our insurance covered the radiation and the clinical trial even though the radiation could’ve been done in Israel. The insurance didn’t cover the clinical trial, the clinical trial was done at MSKCC.
The HMO covered the clinical trial and the private insurance covered the radiation. We had private insurance and an HMO, but they did not want to pay for anything, but we told them that in the case of Gali’s tumor that there is just as much chance of being cured associated with the clinical trial and the protocol. There was no difference between doing the clinical trial and the regular protocol because there was no guarantee that any of them would work. If this was a treatment in Israel then they would tell me to go do it, and that your daughter will be fine, and I would have done it, but that’s not the case. I explained that I didn’t have any other solution, because an experiment is not covered by the insurance if there is an alternative treatment that works, but we didn’t have any treatment that we knew would work. The success rate of the protocol wasn’t high in Gali’s case, and it didn’t work anyway.
For the radiation, we explained that in Israel they don’t have a lot of experience and that they don’t believe in giving a low dose of radiation.
Also, I truly believe that Professor Finlay was our only method of doing the clinical trial because he was previously the head of the brain tumor department at MSKCC. We had to go to the next stage of the treatment for Gali after the chemotherapy. We explained that the only option was to go the United States. Eventually, they agreed with us.
About The Clinical Trial
The clinical trial that we used is called “3F8”, with Iodine I 131 Monoclonal Antibody 3F8. It is used for treating patients with Central Nervous System Cancer.
The basic idea of the clinical trial is that there are cells that they know how to find tumor cells and carry tumor-killing substances to them without harming the normal cells.
In our case, before Gali could get the treatment they had to put a device called an Ommaya in the brain. The Ommaya is like a portacath, but in the brain. Through the Ommaya they inject the medicine or antibodies which travel to the brain fluid which later travels to the spine and attaches to the tumors. They also had to do a test to see if fluid in the brain flows to the spine because sometimes it doesn’t flow, and if it wasn’t flowing between the brain and the spine then the treatment wouldn’t work. The Ommaya insertion was also a brain surgery which could’ve been done either in New York or in Israel. We had an agreement with the insurance company to do the Ommaya surgery in Israel because it would have cost $50,000 to do it in the U.S. Remind you that at that point in time we still didn’t know if we would even get accepted to the trial.
So we went back from the U.S. to Israel to do the Ommaya surgery which was done by Dr. Michovic. He knew how to insert the Ommaya, but it wasn’t the best device, and he didn’t put it in the optimal location. After that, we went back to New York to do the clinical trial. I didn’t know there was a problem with the Ommaya until after we went back to New York when Gali got meningitis, and they had to remove the Ommaya in New York. They then replaced the Ommaya with a new one and inserted it correctly. Only then I understood how much they don’t know in Israel about the Ommaya, and where it has to be put.
To this day we didn’t remove the Ommaya after we finished the treatment because the removal would be another brain surgery. It was put in a very delicate place and it isn’t visible.
So the lesson is that we should’ve stayed in New York and done the Ommaya insertion there, but we had a cost issue, and we had no choice. We could have paid it, and we could have argued with the insurance company, but at the end, we would still end up paying for it because they did the Ommaya surgery in New York and not Israel.
The insurance didn’t cover the second Ommaya surgery, meningitis, and the hospitalization due to meningitis. Two weeks in the hospital exceeded the maximum amount of money the insurance would pay for. After that, we tried to get Medicaid in the United States, and I had to work a lot to get the approval for it. It took about a year to give them all of our information about our bank accounts, salaries, and everything else they wanted from the last five years. It took me a lot of time to get everything for them; all the receipts, all the visas, all the bank accounts, and everything else. Everything had to be in English and in the end, they approved it. They approved $100,000 for Medicaid to pay.
My experience here is that when you have to do something that is not usually done in Israel, like the Ommaya, just don’t do it. Only do it with a doctor that is highly experienced with it. This is of true not only for Israel, but for any country, or for any doctor or hospital where they don’t have the same experience because as we know, especially in pediatric cancer experience makes all the difference.
Side effects and long-term implications
There were possible side effects or long-term implications for everything that was done.
For chemotherapy especially you have to pay attention to the possible short-term risks; hygiene, making sure you have the right dose, and making sure you have the right medicine because of the lowered amount of white blood cells. It’s very important to pay attention to everything. These are the effects of chemotherapy, and everybody knows about them.
I also heard that the bone marrow transplant has an effect, but it isn’t as bad as chemotherapy.
For the radiation the risks are different. When you do the radiation treatment to the brain and the spine there are two major long-term risks. One is damage to the brain. It progressively lowers the IQ level slightly. If you do the high dose of radiation at the age of three then the IQ can be decreased by I would say 20 to 30 points. If you give a lower dose of radiation than there is less damage.
When you do radiation on the spinal cord it can change the body and the spinal cord. The spine will be shorter than it should have been and it also decreases the height that you can grow to.
So these are the risks, there is not much to do about it.
To summarize, the side effects of radiation to the brain would be brain development, IQ, and maybe functionality.
The side effects of radiation to the spine would be the development of the spine, skeleton, and maybe being imbalanced. Another side effect of the radiation is that Gali doesn’t have a lot of hair.
These are the risks, and there is not much to do about it besides knowing about them.
What we did for Gali for the past years is that we gave her a lot of help with cognitive issues, speech therapy, occupational therapy, and art therapy. Any therapy that you can think of is very helpful because when you put the brain to work, the cells that were damaged during the treatment can grow back.
We are constantly trying to stimulate Gali’s brain because it is like a muscle and if you train it, it will be able to develop. Now she is six, and she just started first grade. Even though she regressed she didn’t regress too far.
She is not at the top of her class and I don’t think that she ever will be at the top of her class because of the regression, and her emotional problems. She’s not like kids her age cognitively. It’s not easy. Due to the fact that she doesn’t have much hair and she has scars and she’s a bit smaller, she looks a little different. She has some emotional problems because of her lack of hair, smaller size, and from going through everything that she went through. She still remembers and still has medical follow-ups. She’s not an ordinary girl, and she knows it which makes it difficult for her to accept everything.
Her studies are difficult for her because she needs to put in a lot of effort to study. It’s not an easy process, but we see a lot of progress. As much as we put more time into it, and we bring good people to help her you have to give a lot of support to a kid like this for emotional, and for cognitive progress. Her grandmother and everybody around her comes to help her. It’s not like you can say okay, the illness is gone, she’s now healthy, that’s it. If you want her to be able to have her own life when she grows up, then you have to give her everything she needs to do it, and this is done through the constant help that is given when she is ready.
For the first two years when she was in kindergarten, we did not put any pressure on her, and we just let her be a very happy and smiling kid. She’s happy, she’s very friendly, and kids love her which is more important than the cognitive issues, but to get prepared to join school is important. We thought about postponing school for a year, but we didn’t because she wanted to be like a normal girl, and start school with kids of her age. We said that it’s better to give her more confidence to go to school and to be with her friends, even though she won’t be the smartest kid in the class, which is fine.
If you could go back three or four years, what advice would you give to yourself a week after your daughter was diagnosed?
I think the fact that you have to be proactive is the advice that I give to any parent that calls me. I would also say to constantly believe. It’s possible.