Tomer Mann, was diagnosed with Bcor Sarcoma, when he was 2 years old, on August 2018.
Adi Mann, Tomer’s mom, is sharing her son and family’s journey through the disease, treatments, and challenges.
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.
I’m a mother, the Mother of Tomer Mann, 5 years old today.
What were the early symptoms?
Tomer began to limp, and it did not pass.
Then, at the same time began very strong pains during the night that were not affected by paracetamol and ibuprofen altogether.
From the time the limp started, it was 3 months.
Tomer, and Oliver, the kid from Canada who had the same tumor, both did PET-CT at the beginning.
In the beginning, Pet-CT is taken in order to see what is the situation in the body and if there is, if and how much the cancer is widespread if there are metastasizes.
Pet-CT cannot detect this tumor, and I was very happy about since it meant that Tomer would never have to PET-CT ever again in his life.
What did you do after the diagnosis?
Tomer was diagnosed in August 2018, as I said, and as he was diagnosed, we were asked to get to the hospital as soon as possible, to do a bone marrow test to make sure that the bone marrow is not infected.
They explained to us about the protocol he will receive and go through until the end of treatment.
Which is a protocol for Ewing Sarcoma.
We started with chemotherapy treatments. Our treating physician was Dr. Iris Kvantzel, from the Safra children’s hospital in Sheba.
What were the protocol and treatments your child received?
It was 5 days of hospitalization, then we were coming home after 5 days, and about after 3 days his neutrophils were really prolapsing,
and his fever went up, and then we were returning to the hospital, and then it was usually a hospitalization of 5 days.
It also happened that we stayed for 21 days in the hospital, since there was a fear there was a contamination in the port.
In addition, during this hospitalization, we did a surgery to remove the port, and then surgery to return the port.
This was our schedule, of more or less, 21 days out of a month of hospitalization.
The chemotherapy was protocol VIDE, which is:
Vincristine, Ifosfamide, Doxorubicin, Etoposide.
These are the toxins that were injected into him,
For six months, six rounds. After these six rounds, there was a break to allow the body get stronger.
There was a decision crossroad- whether to do another surgery or do another bone marrow transplant.
Which was a self-transplantation of stem cells,
We decided that we’re not allowing Tomer will be operated on again in the spinal cord, and we did the transplantation of stem cells.
There is a transplant from a stranger, and there is a self-transplantation, where blood is being harvested from Tomer,
and then good stem cells are being separated from the rest of the blood,
and those stem cells are being kept until the transplantation is being made.
It is done in a very specific timing, while the immune system is still strong enough,
so the stem cells that will be transplanted are strong enough to have a successful stem cell transplant.
After the second chemotherapy session, they made the stem cell harvesting.
The procedure is done by connecting both hands to a transfusion, and to a machine.
It is a very long procedure, he sat there for 8 hours I think, and he is not allowed to move, every slightest move stop the machine.
The machine does not continue to work. You are sitting there for hours, waiting for the machine to collect sufficient amount of blood so eventually,
it will be possible to do the transplant with the stem cells.
We were very, very careful about hygiene. I brought everything from home. I brought Chlorax, detergents and a mop and a rag and wipes, I did not let the hospital cleaner enter the room, and I cleaned there by myself the whole time.
The release is that one can say with certainty that the body has regained the stem cells and that the immune system has gone up and that all the indices have gone up and reached a state where he is not in Neutropenia anymore.
we were released on the 21st day.
After the transplant, there was a recovery, and we flew to the US for protons radiation.
For five days a week, each morning, getting up after fasting, arriving, going through the radiation,
something that takes about 30-40 minutes, and continuing the day, we were not required, fortunately, to undergo in parallel Chemotherapy or treatments or hospitalizations either.
This radiation doesn’t exit in Israel, because these tests are very expensive and sophisticated.
In Israel, by the way, only 99% of the people who get the visa to fly and get these radiations are children and not adults.
The reason we insisted on these radiations – was that we found a child who had the same cancer like Tomer, and underwent these radiations. His parents explained to us that once you get to the phase of radiation then only do protons radiation, they are accurate and do not harm other organs that are closed to the tumor area, with as little harm as possible, in the tumor area and around it, so that’s why we insisted on it and it really happened.
We did the radiation at a protons center called Procure, Somerset, New Jersey.
Our check-ups were at St. Peters in New Jersey, which is very close to the center itself, something like 10 minutes’ drive.
He went through MRI, blood tests once in a while, but that’s it. Only for surveillance, to see that his counts does not go down following the screenings and to see that he feels good.
To Make it safe
No more than that in our case.
The doctors are amazing, there is a Jewish nurse named Karen, Dr. Z in- https://www.saintpetershcs.com/Physician/Nibal-Zaghloul,
St. Peters hospital with the nurse Karen, they work amazingly wonderful and they are super nice, and they keep on continuous telephone contact and emails and asking how does he feel and everything and if he needs anything.
The doctor who accompanied us was he ( Dr Jae Y. Lee, M.D, PH.D), and Prof. Hug met us there at the beginning of the treatments.
Can you describe how you dealt with the side effects?
He had a massive diarrhea.
He had a massive diarrhea, sorry for the description, diarrhea that is was very viscous because of the phenomenon of mucositis, due to chemotherapy.
Mucositis is sores, both in the oral cavity, in all the ducts that reach the stomach, and in the stomach.
It was really, really hard.
Some vomiting, not something terrible, not something you cannot work with. However, he had some vomiting.
HEMP oil – oil from cannabis seeds. It is a cannabis seed oil, it does not contain the active ingredients of cannabis,
it is actually made from the seeds themselves, and it is an oil that also helps the immune system, it also strengthens it, and pads the entire digestive system.
That made wonders for Tomer.
What were the main crossroads you encountered?
We insisted to fly to the US because I knew this was the place, that as a family could enjoy together, do things we did not do during the half year of chemotherapy in Israel,
since we were hospitalized most of the time, we barely were at home with our older kids.
We have two older kids and we missed a lot of them during this time.
We insisted on going to the US, although they tried to persuade us to fly to Vienna, and I’m very happy about this decision,
also because we have family and friends in the states, and also because it is the place to run as a family and also to enjoy, during this “fun” times we’re going through, is only in United states.
And we really, really enjoyed it.
Tomer, fortunately for us, felt good during the treatments.
We would get up in the morning, he would go to treatment at 7AM in the morning, come back, and we had the whole day ahead of us.
We traveled a lot, met family & friends.
We received a lot of support, also from the Jewish community there.
It is just such little things you deal with in the process, which are, let us say…
A port replacement that should have happened a week earlier.
However, everything is bureaucratic and ego matters within the hospital, until things move, and there is room or there is not a room for it,
and there is time and there is no time, so it took a lot of time, but we could have closed this hospitalization in less than 21 days.
It was a very good time.
The main crossroads we had were before the diagnosis. Before they knew what it was.
We had to do a spinal MRI, and then he actually became paralyzed from it, because his spine was put under pressure and no one knew it was there at all.
We were hospitalized in the pediatric ward, they did a bone mapping for him, they thought they had picked up something on his leg, so they took him to a foot MRI.
On foot MRI it turned out that there is nothing, although I asked that if they are already putting him through MRI then they should also check the spine.
On foot MRI they found nothing and then they went crazy over it because they did a bunch of tests, many blood tests and x-rays and ultrasound, and said that they don’t understand what is happening here.
When they could not understand what was going on here, it was too late in about a week, so they invited Dr. Hannah Golan who is Hematoma Oncologist. She came into the room and asked if he had seen a neurologist and they said no.
She said to them – Quick, bring a neurologist here. A neurologist came and asked me to lay him on the floor, after about two weeks that we were in the hospital,
or a week and a half, he was on our hands, or on the stroller or on the bed. He was a baby, 22 months old, he had terrible fear of everything.
I tried to put him on the floor and he has just melted, like butter, because his legs were already paralyzed.
She flew us for a spinal MRI and then they found out that he actually has it …
This, for me was the most central crossroad.
He turned from a child who came walking to the hospital, and became paralyzed.
HOW IS YOUR CHILD TODAY?
Tomer started this situation when he was two years old, and he’s 5 today.
He feels overall good, He walks and runs with splints on his feet.
He also runs without splints, but the scars he has left are scars in the urine / stools system as well.
He still does not succeed, he does not feel what is happening there, he does not manage to control the stopping of the urine,
and he has to go to the toilet proactively, both for bowl movements and not with the diaper he is still using.
We are still in the process of urinating; we will probably have to take pills that contract the bladder muscle so that the urine does not actually run away.
This is one thing and the other thing is the splints on the legs.
Tomer is still paralyzed in his feet; he does not tickle when tickled.
However, he is fine.
He does strengthening physiotherapy, Hydrotherapy.
Overall, he is an active and happy child.
We say thank you for what we have.
It is true that the world is destroyed on us and the ground drops under our feet.
However, I want to say that most children recover from cancer and most children go through it. At the end It’s up to you how you will get through it.
In attitude, in energies, in how you talk to the doctor next to your child, in how you talk to the child,
what you explain to him and how you explain to him.
Never talk above the child, always explain to him what procedure he is going to go through, and what ate the consequences.
Of course depending on age, but that he always knows what is going to be the next step. It gives the child a lot of confidence.
It is okay to cry next to the kids.
It is okay for them to understand that it is hard for parents too, and they are sometimes sad or worried.
It is fine; there is no problem with that.
Not hysterical crying, but its okay for the kids to see us cry and see that it is hard for us too.
The best tip we got, from parents we met on the first day we came to do a bone marrow test is to go through it day by day. Every day that passes, to say thank you and move on.
Do not look far.
It is much easier to get through it this way, than develop anxieties that are imaginary and we do not know if they will happen or not.
Irrelevant. Concentrate all your efforts and all the energies in giving the boy or girl the powers and deal with here and now.
One last tip – always, but always, trust your intuition, always.
Never, no matter who the doctor is, professor, doctor, always rely on your intuition and fight for it. Until they prove you are wrong.
Do not put your intuition aside, because intuition, in the end, and it’s from a lot of cases I’ve heard, has been proven right. So always, rely on intuition and go with it.