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.
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 treatments, 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.
Testimonial Transcript:
–>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?
- 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!
