Ofek Keesing was diagnosed with Telangiectatic Osteosarcoma, when he was 18.5 years old, in June 2017.
Rivki Keesing, Ofek’s mom, shares their journey through the disease, treatments, and challenges.
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My name is Rivki Keesing, my husband and I have four children, the eldest is Ofek.
What were the early symptoms?
When Ofek was 18.5 Years old, he started having pain in his right leg. He would run at least three times a week and he started to feel pain.
I am an occupational therapist, and I referred him to physiotherapists and they referred him to a family doctor. The family doctor thought he had stress fractures, or inflammation, and all sorts of things and there was no hysteria or stress around the subject also, Ofek has a very high pain threshold and he did not complain very much, he said, he felt its more difficult for him to run, that he feels weakness.
From there, we got to a physiotherapist who recommended a bone density test, in my opinion, half a year after he started reporting the pain, maybe a little less. We did the test, and it came back with a finding of significant osteoporosis, which is bone thinning, and it was very strange. I saw it and said, but what happened here?!
So we made an appointment with a specialist orthopedist and he sent him for an X-ray and MRI. Since I have knowledge in the field, I looked only at the results and my mistake was that I did not look at the X-Ray itself, but only at the decoding, and it was written there that everything was fine, and then he went to do an MRI.
He was 18.5 years old, a very independent person, and he went back alone to the specialist doctor at Hadassah, Dr. Yosef Lau.
The doctor suspected a benign tumor; once he saw the MRI he immediately referred us to Dr. Pfizer at “Shaare Zedek”. He spoke to him immediately privately. It was on the eve of Lag B’Omer, 2017, I really remember the location.
Dr. Lau made an appointment for us for Sunday with Prof. Pfizer. We got to him and I already read on the internet, a bit about the options, that it might not be something good and the other option was, it could be osteosarcoma, but everyone around me said – what is the chance, what is the chance?
Dr. Pfizer saw the tests and sent us for another MRI. When the results of the MRI came back he said: “listen, you should have surgery”.
He was very gentle, he is an amazing person and an even more amazing doctor, and I saw that it is hard for him to ruin his dreams of Ofek. In addition, he told him, it is a benign tumor, apparently, but it is a very aggressive benign tumor, army, affairs, you have to think, it is not something that will happen. We set a date for surgery.
What did you do after the diagnosis?
We were very lucky to meet Prof. Pfizer, he asked for a biopsy, and we did a biopsy under a needle, he called us right away and said: “come now”.
Now, we know that “come now” is never good, and yet you do not think about it, maybe he wants to precede the surgery and maybe and maybe and all sorts of things like that.
When we got into his office, he said that in fact, the biopsy came out very abnormal and that it turned out to be a cancerous tumor of osteosarcoma. However, the tumor did not look like that to him according to the MRI. Anyway, he said he had experience with cancerous tumors, but mostly, he treats benign tumors and he referred us to Ichilov, Dr. Michal Laufer-Perel, where there is a better unit and I have closed all the corners for you.
He closed everything for us.
What happened is that the MRI showed a huge tumor in the Femoral Distal, which is the thigh, the part of the thigh that is closest to the knee inside the bone itself. A tumor of about 15 cm. Such a tumor according to the MRI we were also told in Ichilov, one of the doctors at the oncology orthopedic clinic in Ichilov told us, that he would not do a biopsy for such a thing, he was clear that it was a non-cancerous tumor, because there is almost no chance of osteosarcoma, which is a very very very violent tumor, will grow to 15 cm without breaking out of the bone.
Prof. Pfizer told us that when he was sitting and planning the surgery, then he remembered of a case he had 30 years ago, of a guy who was like that. The meaning was a meaning of life.
If he was operated on immediately, it would cause cancer to spread and erupt in the body, and in Osteosarcoma, the chances of recovery are from 70% to as much as 10-20% and our story could have been completely different.
The fact that Prof. Pfizer insisted on the biopsy was really a miracle for us.
I think this is the first stage, even in benign tumors, it is worth doing a biopsy, and it is not harmful.
In any case, we were referred to Ichilov to the amazing Prof. Gorczak.
To the Department of Ortho-Oncology at Dana Children Hospital.
Ofek was almost 19 at the time, just before his 19th birthday, he was already considered an adult, but because it is a cancer that mostly occurs in children or young people and also due to his age, they put him in the pediatric ward and it was a real gift. They also did an open biopsy. They did not rely on the images of the imaging and did not rely on the biopsy, which was done at Sha’arey Tzedek hospital, and then we got the diagnosis that it was unequivocally Telangiectatic osteosarcoma. It was June 2017, the diagnosis.
On his 19th birthday, he went into PET CT and we saw that really, miraculously there was no scattering and no metastases anywhere, that it was just in the foot.
What Were the protocol and treatments your child received?
He started the osteosarcoma protocol right away,
the protocol is usually 9 months. Between seven and nine months, depending on how you get the chemo. Eighteen rounds of chemotherapy and he was told that there would also be surgery and they would have to remove the infected part of the bone, replace it and then continue with chemotherapy for another, say, between three and four months.
Can you describe how you dealt with the side effects?
Ofek, the significant side effect he had, was low magnesium. he had it both during the treatments and after the treatments, something like three years, for a long time he had low magnesium.
Even after the magnesium balanced, after each additional surgery, there was once again a psychic decrease. This is something that is not tested; in the US, they do not test it at all.
By the way, magnesium also caused hair loss. So even after his hair came back he had baldness all the time. By this he knew, that even without blood tests, in the US they do not do such tests at all, so he would start taking magnesium, and when he would start balding again, he took more magnesium. He had side effects in the heart, all sorts of, mild heart failure, and thank God it passed, the seizures…
Allergic anaphylaxis seizures were the most common side effect, to this day we do not know whether it is from the treatments, from the genetics, from the stress. One can’t really know, but tinnitus in the ears he had, and to this day he has it and all sorts of stomach problems.
I told Ofek that I think he had many more side effects, but he ignored them and decided they were not worth referring to.
Then we proceed to biological therapies called Mepact, which started a few years ago. I found out, that abroad they have not introduced it yet, the insurance companies do not let it in, not even in the US and that is very important in my opinion, especially for people who travel for treatments abroad.
Mepact is a biological treatment, which protects the lungs from the cancer appearing in it. It reduces the risk of recurrence of osteosarcoma in the lungs.
It was 48 Mepact treatments, some concurrent with chemotherapy, some even later after chemotherapy.
When all chemotherapy treatments are in hospitalization for a minimum of 4 days of per round. We had three days once, it does not happen.
And up to two weeks plus when it comes to chemotherapy that needs to be cleared of the kidneys and very close follow-ups. Lots of hospitalizations, lots of hospitalization time.
After the open biopsy, Ofek was under a total ban on stepping on his foot. In fact, the huge concern was that the bone would break and there would be a scattering of the tumor in the rest of the body. Three weeks before the planned surgery, actually, at Ofek, the knee was not yet infected according to what they saw, and it was really about 15 cm, but only, “only” in the hip and there was planning already. We sat with the doctors and got a replacement plan to cut the thigh and insert a bar From platinum to replace it, the knee was supposed to stay and this was supposed to be relatively, not an easy recovery, but his lifestyle afterward, was supposed to be good and better functioning and so on.
So even though he was weak, it was always important for him to keep going, he was an animal …, just to go out, do as much as possible and it was really interesting too because it would raise his iron every time. And he would come home exhausted and we were told that the next day he sure would need a blood transfusion. If he had come out he would not have needed a blood transfusion after and if he had not come out, he would have needed a blood transfusion the next day. That’s how it worked. There is no doubt that it has had a positive effect.
He went to Blum village, where my two brothers live, to stay for Shabbat with them.
In the morning my brother gets up, and hears knocks on the door. Seeing that the door was locked, he realized that something was wrong. They called Ofek and he did not answer.
This is a very small cell, “kibbutzniks”, an old building, a small place. They broke down the door, and found him squatting on the floor, following the chemotherapy, he underwent a very powerful seizure, and he was stuck in the door and of course, broke his hip which was very weak anyway.
They called an ambulance that insisted on driving him to Ziv Hospital, which was terrible.
He did not get the sedatives, he had a complex fracture and when it actually rubs against each other, it is excruciating pain.
Fracture x-Ray:
This was one of the toughest days in this whole story. It took us almost a whole day to bring him to Ichilov. When he arrived to Ichilov he was already with a certain infection, he had a fever, it was impossible to put him in for surgery, and then he was hospitalized.
They put a weight on his leg that pulls the broken part of the leg so that it does not rub against each other until the fever went down, the antibiotics started working and then it was possible to operate on him. It was a very hard decision, and it was decided not to do the oncological surgery, we will set the bones and let it heal and after that, we will see what the situation is and according to that, we will continue.
At this point, we saw, first, the fracture happened that he received enough chemotherapy and the tumor did not send metastases. Indeed, it has spread locally, to the knee and the muscles around the thigh that were not previously infected.
Those actually complicated things, this is where the complications started, let’s say so.
What were the main crossroads you encountered?
To this day, we are talking about four years, now we are almost four years from the diagnosis, thank God, he is clean.
But orthopedically, there were complications as a result of the fracture and basically what happened was that almost all of Ofek’s muscles were infected, so they took out lots and lots of muscle and left the muscle at the top -Quadriceps, but around the 15 cm, they replaced from the bone, was mostly iron of the replaced platinum and leather.
Ofek is a psychic fighter; he just left the hospital and started immediately with physiotherapy. and I have a lot of lovely physiotherapist friends, we felt that in the hospital he does not get enough physiotherapy, and really in the hospital there is not enough appropriate physiotherapy for such guys, neither in the type of physiotherapy nor they have a physiotherapist in the proper frequency. Suppose she comes once a day, but she doesn’t yet know how many patients she has in the same hospital, and if she is coming and he is in chemotherapy at the exact time she is coming, then the treatment won’t happen. And if she comes and he tells her to listen I’m weak, she does not have time to sit with him and start sitting with him a bit, there are 20 minutes, and if not, then no.
When he came home, we had a fleet of physiotherapists that he would go to or they would come to us, and they activated him and he worked, really worked.
And something did not move. The knee did not bend, it just did not happen. Whatever we tried, it did not work. When we went back to his orthopedist, Dr. Gorczak, the thought was that because he was stuck in the irons, because of the fracture for a long time, then there is a lot of adhesions around the knee and because he does not move enough, and that’s the first thing I said, it’s a little weird, he does not move enough and did not do enough physiotherapy because he is in very long hospitalizations all the time, so everything is contagious, it is not possible to put him in surgery now during the chemotherapy but when he finishes with all the chemotherapy then they will put him in surgery and remove all the infections.
At the beginning of May 2018, he finished with the chemotherapy and in the middle of May 2018 he went into arthroscopy, they brought one of the biggest experts in the country to arthroscopy, and we were sure he went in for surgery, clear the infections and move on and everything is fine.
And actually, they came out to us from the surgery and said that they cleaned all the adhesions it was full of adhesions, and the knee does not bend, even in the operating room we are not able to bend the knee and there is a problem.
They said there was a problem with the main quadriceps muscle, the huge muscle we have in the hip, the largest muscle, it probably shrank a lot during the time the leg was in the irons, it did not move, and it stuck the whole thing. The option is surgery to remove the adhesions from the muscle.
At this point, we realized we were getting tangled up. Here we got entangled. And here
Dr. Gorchek was very honest with me, and by the way, it characterized him all the way, he told me – the surgery itself I can do it, it is not a very complex or complicated surgery, but I do not know much that have recovered from it in the country, He also told me – “I did not do a lot of these, I can do it, it’s relatively easy, but I did not do a lot of these” and then I realized that we need to look abroad.
And if there is no proper rehabilitation then there is no chance, no matter how good the surgeon is, it will not work, and then I realized I need to turn the world upside down.
And really, I called and really when I, I believe very much that there is always the solution no matter who, there is one person who knows it and I do not know who he is, so I have to spread it everywhere.
And I called every one of my girlfriends I ever worked with, and any of the orthopedists I knew I could have a relationship with, no one knew to give me a name. My grandmother, who was a Holocaust survivor, said: “Without a drop of luck …” I do not remember exactly the sentence, but you cannot succeed without a drop of luck. That luck was that I went into our grocery store and suddenly I saw my neighbor, who is a good friend of mine and also a physiotherapist. Coincidentally I did not turn to her, I forgot her, do not know how. And I said to her – “Avital, what am I doing? Tell me who we’re going to?”
She looked at me and said: there is a doctor here now, who came to give us lectures, now they do exactly things like that. He came to us, they work in Florida and arrive to Israel to operate on Schneider children on other matters, and I know he also does these surgeries, I heard he performs them. Talk to him.
I sent my sister-in-law who works at Schneider to knock on the door, where I knew he was, because of course, I do not have his phone, e-mail, I sent him an email but I knew that within two days he was returning to the United States, So we knew we had to get him.
So I told her: ”you are going there knocking on the door until he answers you. Between surgeries, surely, he will come”.
She reached him, and she told him he had an urgent email from me, and he answered me immediately. His name is Dr. David Feldman, he answered me and told me you can come a second before I get to the airport. https://paleyinstitute.org/#/
I drove to Schneider with all the materials, I showed him everything. He told me that absolutely yes, it’s surgeries they do really often. They have a protocol, that the surgery really is not a very complex surgery, but the rehabilitation is one of the difficult rehabilitation so they have a rehabilitation protocol and he is willing to accept us only if we have insurance that can also pay for the rehabilitation for surgery because otherwise there is no point in doing surgery.
In addition, he asked to see Ofek, which complicated things for us very much later on. Because he was not in a position to fly to Florida.
In the end, we had to meet halfway, in Ireland when he was on holiday.
We did such things. Luckily, we have private insurance that covers group insurance in our hometown, which also covers surgeries abroad. What the doctor in the United States told me, he told me, I want to tell you, it was one of the sentences that accompanied us three years later in all future complications. He told us: “I want to tell you, that the most important thing is to create a support system for him”.
If you are coming from abroad, you need to come with friends, with family with someone who will be your absolute support set, because rehabilitation is a very very difficult rehabilitation, and if he does not have this support it will not help, even if you are in the best place, it will not help. This understanding that is, that we must not give up on his friends, and his companions, the ones he loves and wants, they were the key to Ofek’s very great success, truly, God willing.
We flew in September, he underwent the surgery, it was very difficult.
The protocol that followed was terrible, he had to be with a device of bending the knee CPM, 24/7, it’s infernal pain. Three days after the surgery, it was Rosh Hashanah, and we closed with some Chabad house, we were clear he needed all the time, we also kept thinking about his mental state and it was clear to us that he would need help and someone to help him.
We are religious, Ofek is not religious, but he is very connected to the Israeli holidays, the atmosphere and everything, and it was clear to us that he ought to have proper Rosh Hashanah and somebody to help him.
In the end, it was very boring, only elderly people and we did not interest anyone, he was stuck in his room, the whole Rosh Hashanah, and he was released especially early for it, which meant they got him a little drained too early and the in first night he did not stop bleeding on a psychic level.
In the United States, at night, private doctors go home.
All my American friends told me, just do not come to the emergency room. When it happened at night, when I realized that our only option was to get to the emergency room, I just stood there all night and pressed on the wound site for hours, hours. I almost had necrosis in the morning. By 7:00 am in the morning we knew the doctor was at the clinic and we just flew to him and he stitched it up again.
We knew that if we took it to the emergency room then it would be contaminated on the spot, so it was worth it.
The protocol, was twice a day physiotherapy treatments that included stretching in excruciating pain, really take a leg with, must do stretching, because otherwise, all the scars recur again, so every day they increase the range a little more and stretch very much, not everyone can undergo such surgery and I think it is something that needs to be known in advance who.
But it’s an operation that is not always worth doing because its rehabilitation is really one of the most difficult.
After three months of very intense physiotherapy, he got to a point where he had a knee bend of 80 degrees, which is very nice. It is considered a beautiful bending.
Ofek returned to Israel and he tried to return to life, he decided he was renting an apartment in Jerusalem, he had a fitness trainer, he was there every day, he started working in some bakery in the market, he was in a lot of pain, he would stand on his feet for hours, but he said this is my way, I want to do it.
Feldman, his doctor, the amazing doctor from the US, who is really charming, and speaks Hebrew, which is very important. He arrived with his partner, Dr. Dror Paley, an Israeli whose parents moved to the US, when he was young, is a very gifted orthopedist, and he invented many surgical orthopedic methods. He is considered, as far as I know, as one of the best surgeons in the world, if not the best in the world.
Feldman, who at the time was his doctor, his only surgeon, is his partner, they are partners at the Paley Institute in Florida, and they come to Israel at least twice a year to operate at Schneider hospital.
Feldman came here to monitor and analyze his patients.
He came here in April 2019 and of course, we came to the check-up with Ofek, and sparks were in flying in the air. Ofek reached a 90-degree knee bend, he was very active and Feldman was shocked by him.
He said, “it is rare to see the surgery succeed in this way”. Yes, we were still talking about the pain.
He thought the pain was due to his Patela being very thin, he thought there was a rubbing there.
He said: “wait a little longer, let time will pass from the surgeries and we will think about replacing your Patela. Maybe the whole knee, we will put a mechanical knee”. All in all, it was really… we got out of there … a week and a half after that, Ofek called us and said:”if you come tomorrow, bring some sedatives with you, because I’m in pain”.
Now Ofek never asks for sedatives, he could not move. He told us he was in the gym, did the treatment and at some point, suddenly he felt excruciating pain in his leg, he could not walk, he crawled out, ordered a taxi, and drove home. He said: I think it’s sore muscles or something.
It wasn’t a sore muscle, it’s not too much. We drove to Ichilov and there was a serious infection in the implant.
Probably what happened is that he had a sore throat a week before, two weeks before, something like that. We later realized that really, his leg also underwent so many surgeries abroad, closed it so much, and had nothing in it.
If there’s some virus, if there are enough muscles and all, then, then the chance for infection is smaller, but he had skin and implant, than everything, if it was not today it would have been another two years that a virus will would have settled on his leg.
They opened the leg, cleaned the infection and he was hospitalized for a week, more than a week.
Again, once again, right after, had to start physiotherapy right away, and he did not start, they did not even know they needed to.
It did not change our story in the end. Still, I find myself repeating it to parents and people, with sarcomas, when it comes to bones, when it comes to muscles, when it comes to joints, in particular, if there is a joint involved, I say it as a professional, that has done some training in the subject, both during the time I was with Ofek, and also from our knowledge with Ofek, physiotherapy is required immediately.
Doctors here in Israel, are less aware of it and less enforce it, they do not require it and there are a lot of functional limitations afterward just because they did not do the physical therapy on time.
Ofek was released home after a week and a halfת in the hope that the infection had passed and he could return to bending. And we started, we arranged physiotherapy for him three times a day, and he was in very, very strong pain, but it was clear to him and us and the professional staff that if his knee won’t move, we will not do stretching again, then everything he achieved was wasted. So, for two months he could hardly get out of the house and it was a very dark time.
And we did not make much progress in bending, he did not succeed, he would walk outside and his leg would hit stones, it was impossible to go to the cinema because we have to make sure every time we have the seat on the far right side and that there will be room for his leg to sit…it is impossible to get on a plane. Because … if you order business class, that’s great, but this, who gets on a plane every time in business? We sure do not; there is no place to put your feet.
It was impossible to sit on the bus, in the car – you need a certain car. Now in the end, for everyone and also the doctors here, in Israel, it is important to say, then to his final decision, and I will emphasize it again,
It was very clear to everyone – “So, what’s the big drama? So, you’ll have a straight leg for your whole life…
A straight leg for a young person is suffering, it is a really low quality of life.
It always required adjustment and requests and pleas from places and from all the places we approached, maybe once, they understood us without us having to beg and without us having to make a drama out of it.
Even when there is an understanding of accessibility, there is still no understanding of such a situation, and I was told –“…but there is room for a wheelchair…”. However, it wasn’t helpful, so he was willing to do anything to make that knee bend.
When we asked the doctors what to do, both the doctors in the United States and Dr. Gorchek here, this is a procedure that is not usually recommended, really not recommended, because basically what you do is you put the patient under anesthesia, taking him to the surgery room and then forcefully bend the leg and break the scars that prevent the possibility of moving, bending … and the damage can be very big, because there can be damage also to the muscle, there can be other damages as well when doing this.
But since at this stage there were not many other choices, we decided in consultation with Dr. Feldman, Dr. Gorczak, and some physiotherapists from the United States and in Israel, and here it is very important, we were all the time, I, was the bridge. It does not happen alone, the doctors do not make contact with each other, even if they really want to, and we have two doctors with the best intentions and with the best will, it did not happen, they promised me they would talk, and it never came to fruition.
We all made the decision together, that it was worth doing the procedure.
He was hospitalized for manipulation, it went through, it is a procedure of zero time, and he was in euphoria for a week because he managed to bend his knee when he was in the hospital for a week. He managed to bend his knee very very very nice, but he was on very strong sedatives and he continued three times a day with physiotherapy, that his knee was bent with force while it was excruciating, and he did not give up and didn’t let us to give up.
I remember one of the physiotherapists telling us: ”I do not have the heart to do it anymore”, and Ofek said – go on, go on, he just did not want to lose all the hard work that was achieved before because we hoped it would pass.
Slowly, it became clear that not only it was not going away; the pain was terrible, terrible, really…
He lost weight, he stopped eating, at this point we said, let’s try to fly him to the United States, where there is a rehabilitative array, of those who know these situations maybe it will help, and then we had to do crowdfunding, because it is not surgery, and once it is not a surgery, no one is treating, and the treatments there cost $300 per day, just the physiotherapy treatment.
He actually went there for a month and a half, 50 degrees but the pain was terrible and they told him “listen, that’s what there is”.
And here I have a very, very important message, I tell you – it does not matter who tells you – that this is as good as it gets, quality of life can always be achieved and improved.
It is never, ever true, that with that you have to get along and that’s your life.
I do not think they knew how much he really suffered, and he came there every day and he let them do the treatments for him, and he bit his tongue and he did not shout, and in fact, for them, they said – “What’s the problem? You get to 50 degrees, and more and more. It is a little painful for you and it will pass.
They did not realize how acute the pain was. He returned to Israel, and he said to me: Leave me; I take care of myself alone. But this time I insisted with him and said to him: “Let me come with you, you do not know to say how much it hurts you and what you are going through, let me come with you”.
We went back to Ichilov and I told Dr. Gortzak that it is impossible to continue like this. I do not care what you do and what you offer, obviously, something is very wrong. They did another MRI, in the MRI they saw a suspicious finding and they were debating whether to do a biopsy or not, because again, we were convinced that there was a high chance that the infection had already passed.
Moreover, if the infection has passed and it is something cancerous, once we start doing a biopsy we endanger the leg in terms of the infection. If it is an infection, and it is not something cancerous then it does not matter if we have already done the biopsy or not, it will not change the picture.
Luckily, they found out it was an infection. Today I can say luckily when someone told me how lucky you are when we were in it, I wanted to take their head off because it was really, a very very very difficult situation and it was awful to think that the infection came back after this suffering that he went through over a year and a half. That he had undergone psychic suffering, only to maybe get his leg back to function, and even before that, the treatments, treatments abroad, and everything, and when the infection came back it was really unbearable.
When we realized the infection was back, there were not many options, the choices we were given were amputation.
The second option they offered was to actually set the leg in alignment, taking out all that weight. To take the tibia bone, we have two bones there and set the leg so that it will be in a straight position. And here I repeat, this is what is usually done in Israel in these cases, they do it for small children in this situation and this was the suggestion for Ofek.
And most guys, that’s what they choose to do, and I think that’s a very, very big injustice functionality speaking function.
Doctors see it as a success because there are no infections because there are no medical problems later on, and the function, doctors here in Israel do not see the daily function. It basically sentences people, children at this age being with a fixed leg all their lives, and from someone living around a guy Like, it’s very, very hard, it’s a lot harder than you might think.
By the way, when we told this to Dr. Feldman, he told me: “who sets a foot in a young person? It is awful!”
In the United States, they do have the understanding that it is not something that is suitable for children, it is not an option at all, and they hardly offer it to children. They do offer it to older people who do not want to have surgery, which is another matter when you already know how it fits in everyday life.
And a third option he (Dr. Gorchak) said, and he mentioned it, by the way, it’s an operation we do not do in Israel, there is an operation called Rotationplasty, where you actually amputate the thigh and knee, take the shin and implant it upside down the thigh and that is how the foot is used as a knee.
Ofek asked him: “why not do it here?”
The answer was because it looks very strange, it looks different and in Israel, such things are not common.
No one is willing to do it, I offer it to many, and no one wants to do it.
I looked at Ofek and told him – if it is functional, and I am an occupational therapist, function for me is above all, quality of life and function are above all.
Very quickly, right within minutes, it was clear that this was what we were going to do.
It is not easy, high amputation is not an easy life, and again I say, if this was the only option, Ofek would have lived with it just fine and there are some that this is their option.
But yes, I was hoping that there was a slightly more compassionate option, a more possible option for him to live the very, very energetic life he wanted. When I heard that this was an option, I felt at that moment, I said: yes, he will have a life.
It was clear to Ofek from the beginning that this was what needed to be done but of course, it took him a long time to come to terms with this contradiction of how it looked against the functioning aspect.
Immediately we got in touch with Dr. Feldman, our doctor, and he said: yes, we do the surgery, and we do it a lot too.
Whoever does it … he did thirty of these, understand that this is an operation that is being done eight times a year, in total, in the United States. It is a really really rare surgery, not doing it a lot.
At Paley, they do it the most than they do in the whole world.
Dr. Paley himself made 100 of such, Feldman made eight of such, So it was clear to us that we were in good hands.
We really wanted it to be Dr. Paley, but there was a bit of discomfort at first in front of Feldman, I did not know how to say it. In the end, it was both of them in surgery. That was really, we got the top of the top. It was literally an organ transplant, really. And what they did was they cut the whole infected part, rotated the shin, and implanted it back into the thigh. It succeeded, succeeded superbly.
He was hospitalized for a week, and before the operation, he was hospitalized for five days. Now in the United States to be hospitalized for a week- it’s a lot!
Rehabilitation of this surgery, Ofek said that everyone says it is a massive rehabilitation, and he said – that it does not come close to the rehabilitation of the plastic quad.
Perceptually he had to re-learn to use the leg when it was actually upside down.
Using the foot, the calf, he has to move the calf, he wants to bring it forward, he is actually going backward, in terms of perception in the brain, also in terms of strengthening muscles, those are muscles that are the calf, should not be used at all as thigh muscles, they are much weaker, In general, the whole movement.
In general, his movement, in general, we had to, it was very hard, for the first six weeks, there was a ban on stepping, and it was almost forbidden to do physiotherapy. We visited the plastic surgeon every other day, he did incredible work, and I see others, even in the United States who did this surgery, their leg looks like Ice cream cones.
Here is the hip and here is the calf, this is what it looks like.
With Ofek, you can hardly see, the border is blurred, we were with him two-three times a week, we had to keep an accurate record, of how much blood there is in the drains, accurate, like every two hours, how much fluid there are in the drains, he was not allowed to do anything with effort, it was worth it.
So, when he started the physiotherapy, it is very very intense physiotherapy, very difficult and not simple at all, neither emotionally nor physically but it did not hurt him, like the previous physiotherapy, so for him, it was Piece of Cake. It was twice a day for three months. Then he started working on the prostheses, if there is no suitable prosthesis, it is not like other prostheses,
if there isn’t anyone who makes very successful prostheses, and knows the field and knows what he is doing, all surgery is worth much less.
It is impossible to function, it is not a normal prosthesis, it is an orthopedic prosthesis, it must be worn on the thigh first of all, like orthotics, if you’re familiar with that.
The foot actually goes into a trough that is prosthetic and then down there is a whole prosthesis.
Down there is an orthopedic prosthesis, it costs a fortune. Our Israeli HMO (Kupat Holim) did not believe those are the prices. Luckily for us, Dr. Feldman was smart enough and he put it in advance, he said he is not ready to do the surgery until our HMO approves the prosthesis.
He said: for me, It’s part of the surgery, otherwise, it’s not worth it. It’s a very big advantage of this institute we were in, the Paley institute. The doctors are the physiotherapists and the rehabilitation is of these doctors. They work in a tight collaboration. A unique model that is critical in complex surgeries.
In the end, Ofek needed another surgery towards the end, to take out a screw that bothered him. They said it was big and it should not be bothering him, but it did. He was there for almost two years; he completed the treatments officially in November 2021.
How is your child feeling today?
Today he travels the world with himself, trekking, I cannot say that everything is 100%, it is not easy to get used to his prosthesis, it was difficult for Ofek to get used to the way the leg looks. He is now in Mozambique, walking in the woods, hiking with himself, diving, surfing, doing hallucinatory things.
There’s a certain price … he still, he still needs rehabilitation, so he does these things because he just broke down from physical therapy so he said I’m going to build my rehabilitation for myself and I do it, he needs to constantly strengthen his left side because it absorbs a lot of weight, the leg sometimes swells inside the prosthesis, there are many things still, but he has a quality of life and he has a life.
Parents Tips
Do not give up on the quality of life, do not give up if you as parents feel that the quality of life is incomplete, then go back and check and ask.
Now, that does not mean there will always be a solution, but in my experience, do not ask the same people over and over again, if someone told you no, keep digging to the whole world, to everyone you know in the field, everyone you think, spread Facebook with questions, It is surprising to see and do it only if there is a willingness to follow all, after all the clues that are given to us, If you choose not to use it and not to check and find out, do not start. If you start to check and look for information, know that, that no one will give you an answer on a tray, it will not happen.
Even if there is some thread, do not come and say: “oh, it does not seem to me, does not sound to me, check, ask, interrogate, then say it does not sound to me. It is fine because the places I got the most help and information from were the places I least expected them to be.
I really did not expect that the people I turned to and I was sure they will have answers for me, had minimum information for me. It continues to this day.
Ofek needs to learn to get along with a leg that is very, very non-classic, and we need to find many solutions even today and its quality of life. And I keep doing it all the time.
Another thing is not to be afraid to ask for help and when asking for help, to be focused on knowing what we want from people, because to come and say I need help and send, and I see it in posts and I do not even answer them, even when my heart goes out to them, and I even don’t answer and it’s probable that I can help, because it is endless.
No one knows what topic you want help with, and try to think about it and be precise and turn to people you think can really help you in this area, we had an amazing shell, of family, of friends, but I did not address everyone about the same things. I really had some sort of order in my head of who I address in every subject, in everything, because if you just say it’s hard for me I collapse, help me, at some point, it’s very difficult for people, and they do not know what to do with it.
And insist in front of doctors and I will tell one more story. One I had with the doctors in the United States. Because I know the mentality, we were also there before the last surgery, I told the doctor, I want to make sure it is clear that I went in with him for recovery as well. And I knew that with covid it’s gonna be impossible, and he promised me and said he closed everything with the hospital chief, and you will enter.
The surgery was on Friday morning and lasted until almost midnight and there is a Friday night, and Saturday night. And we saw the senior surgeons leave one after the other, leaving their interns to sew and close and they were gone. When they took Ofek out to the hole, to recovery they said come say hello, look at him, we are taking him to intensive care.
I said to him: Yes, his father and my brother will say hello to him and I will accompany him. And he told me – no, he goes alone and I told him, no, there’s no such thing.
And he tells me, listen, we stand there with a blower, stand and turn it on to respire him and he is sleeping and he will sleep all night, nothing to do with him, he is breathing, you have nothing to do and I did not agree, really.
I found myself standing, screaming there at 11:30 at night, on the doctors who really, did an amazing job with him first, if you kill him if one hair falls out of his head, I sue you, because it’s against everything they promised me and everything they told me.
And I picked up the phone at 12:30 at night, to the poor surgeon, who was there for almost 12 hours in a row and he almost hung me but it’s the cheeky Israeli, I told Feldman: they will not let me in, no way, and I do not release Ofek, and I stand here and he will stand here all night and I do not release him to intensive care without me.
From there I managed to get into intensive care, the poor nurse, she could not balance him, and he kept on waking up and trying to lift his head until she managed to balance him, she said, I’m just going out to order him an epidural for tomorrow morning I’ll be back soon. She came out and the second she came out he woke up. And he woke up, with the soul tube in his mouth, and if I had not been there it would have ended either in that they should have done him a reconstruction of the esophagus or something worse, really, what you know is life or death, not giving up, no matter what and no matter in front of whom. Just do not give up.
Amazing Ofek succeed in running with the prosthesis (July 30th, 2021)
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