Category Archives: Kids

Kids, Letters to God, Spiritual

And then the Sky Came Tumbling Down

Back in January, the school nurse saw that my son was having trouble seeing from one of his eyes. So what? I have glasses, my mom has glasses, my sister has glasses. So my son will also need glasses. But he never complained, and since my eldest daughter also had some eye problems, we decided to take the kit to an expert.

Forward to the beginning of May, eve of the Israeli remembrance day, we are in the office of Dr. A, who is an expert children eye doctor (or however they are called). He checks, double checks, and yes, he doesn’t see well from one eye. That’s an understatement. Actually he can’t read the upper line in the table the eye doctors have in their office (those with letters and numbers). But after checking, and re-checking, he tells me that the eye looks fine, so we should start neurological investigations. I came home beat, and just in time for the alarm that marks the beginning of the remembrance day. We put the kids to sleep and sat down to talk. My wife’s mother had a tumor in her brain that had damaged her eyesight.

We decided to get the opinion of another doctor, this time Prof. B who is the head of the eye department of the local children’s hospital. The wait was short and we saw him on Sunday the next week. Again, the kid doesn’t see the big numbers/letters. But now the doctor sees that his pupils react differently. Definitely neurological. Go and get an MRI done. And quick. And if you don’t get an appointment fast, please call me and I’ll send you through emergency.

Withe the help of some great friends, we managed to get an appointment the same week. Tired and nervous, praying for good new but expecting bad ones, our son was put under full anesthesia (It’s hard for kids to stay still inside an MRI tube) and after one hour, he was back outside, doing a very rough awakening (it took him almost one and a half hours to recuperate). At the same time, the MRI was being analyzed by the doctor. The bad news came then:

There’s a big “space-occupying lesion” (SOL) in the middle of your son’s brain and it is bothering his eye nerves. And it’s big. Please go right now to the hospital. I’ll call them and tell them about your case

Thursday, 6 pm (In Israel this is like Friday) we arrived at the hospital emergency room with the MRI results and feeling the world falling below our feet. After waiting for an hour to see the nurse, we were derived to neurosurgery. The on-duty doctor was called. We were asked to put the child in hospitalization for “observation”. Exactly what are you going to observe at the weekend? The kid is completely fine, except for having something abnormal growing in his head! So pictures were exchanged, calls were done, and we came home, beaten, tired.

Oh, how we plan our lives, and how G–d changes all our plans :-). Enjoy life. Enjoy each day. And say thank you for everything you have. Doesn’t matter if you believe in G–d or not. Just say thanks. I am thankful for everything I have. A great job that is supporting me in these hard times, a family that gives me love, many friends who care, help, and are just there when needed.

And if you do believe in the power of prayer, pray for my son. While the doctors are very optimistic in their prognosis, life is full of surprises. I can assure you of that.

Kids, Thoughts

A Ray of Sunlight

It has been a month (more or less) since we started this new part of our lives. So many things have happened it’s sometimes hard to remember what we did yesterday, what’s the day of the week, which doctor/hospital we visited yesterday. That is why I love to write things. It dumps stuff from my brain and makes it easier to think.

So let’s do a recap and see where I left last time. So we came home and my son was not hospitalized. Yea, that is what I wrote. I’ll start from there.

We came back to the hospital on Sunday (first day of the week in Israel) and were greeted by a nurse whose job description is “child brain tumor coordinator” (just the name hurts). She was incredibly nice, took my wife over and talked to her, and explained what we were going to do in this first day. She explained that we didn’t have to hospitalize the kid (at least not yet), which made us happy since we sleeping in a hospital can be a traumatic experience for both the child and the parents. My son did some blood tests – they took like half his blood, but he did everything like a brave man. They took us in and explained to us what they thought was in our son’s head and that he had to do a spinal MRI to check that there was no dispersion. As our last MRI experience was not so good (recuperation was AWFUL!), we were a bit wary. But the nurse talked to our son and asked him if he would be able to stay still for 20 minutes inside the tube, that she saw he was a big man, and this should not be a problem. He agreed to try.

So we went home and the next day got a call that we had a turn for an MRI the next day at 5 am. That was fast. So we woke up at 3 am, drove to the hospital, and hoped that Hanoch was able to stay still inside the MRI tube… Impressively, he stayed still! Even the radiologist was impressed. What a relief! We went back home to get some sleep, and at 2 pm got another call from the nurse – you have another MRI today at 9 pm. So sleep fast, find someone to take care of the other kids at home, and go again to the hospital. We came back at around 12 pm and fell on our beds.

The next day (or the day after, but time gets somewhat blurred here) we had a meeting with the doctors to hear what they thought we should do. The MRIs came back with some small spread in the lower back, but this was typical of this type of tumor, so no need to get panicked. But we are not completely comfortable with the MRI pictures, they said. While we clearly think this is a tumor of type G, we are not 100% sure and would like to do a biopsy. This is done by opening a hole in your son’s head, inserting a needle, and getting a couple of cells out. And we can do this tomorrow if you want.

WHAT?????

Completely shocked, we said we wanted to hear a second opinion, and that we didn’t want to rush if this wasn’t necessary. They said that we didn’t need to rush (so why do the biopsy the next day!?#$%#@). Anyway, the same day, by way of a miracle and some help from the doctors, we went to the best child neurosurgeon there is here in Israel. We got to him the same day in the afternoon. Looking at the MRIs, he agreed that something was not regular in the tumor and that we should do a biopsy. But not a needle biopsy but a full-blown craniotomy – basically open his brain and get as much tissue as we can to better understand what’s in there. A needle biopsy may not be good enough. My wife stopped breathing like for five minutes when he said this. But strangely, this guy made sense, he looked sure of what he was doing… and he has charisma. So funny enough, we thought his idea was good.

But we wanted to get more opinions, so we sent the MRIs flying around the internet to anybody who could help, went to more hospitals here in Israel… And one friend of ours managed to get them into the best children hospital in the world (let’s call it hospital H), where the case was seen by the best team of child neuro-oncologists there is. After some days (cases are analyzed by the team once a week), our friend was told that they didn’t think we needed to do a biopsy. But they never wrote this down and all our emails went unreturned. We kept on writing them, but no answer came back.

And at this stage, the neurosurgeon that proposed the craniotomy changed his thoughts and also said we should do a needle biopsy. We went to see another oncologist and she said we could start treatment without doing a biopsy, or we could do the biopsy. But there was always the risk that the treatment would not match and we would have wasted time.

CONFUSION!!!! Where is the risk management? Did someone compare the risk of a biopsy against the risk of treating for the wrong tumor? After reading many papers, we understood now (once again) that medicine has more unknowns than knowns. And that doctors could not calculate these risks. Each case is special, each surgeon has his own statistics, and there are not enough numbers to do real statistics and probability calculations. This is very hard for two hard-core engineers like my wife and I. So we went with the biggest consensus, and set up a turn for the needle biopsy. But things still didn’t “close” for us, and the opinion from the hospital outside Israel was nudging in the back of our heads.

Time is running out and we have the biopsy next week. On Friday we decided to call the head of the child neuro-oncology department in hospital H… And who would have thought… he called back! After a half-hour talk with him where he explained to us that his team saw the MRIs and that yes, it looks like a “typical” tumor of type G. We see no need to do a biopsy, since we know how to treat them and in the worse case, if after 6 months of treatment nothing happens, then he would recommend a biopsy. And from his experience, in most cases, it is simply the expected kind of tumor, just that it doesn’t respond to regular treatments. And then please call us, he said, because we have already mapped most of the mutations of this tumor, and have very advanced treatments in those cases. But in your case, I would not do a biopsy. And wrote all that in an mail. And he is the biggest expert in the world.

So on Sunday, we ran to the local hospital to show this to the oncologist we want for our kid, and yes, she agreed that we can start treatment without biopsy. No problem canceling the biopsy. Let’s get things running.

Next week they are inserting a Port into my son’s body and will start treatment when he recovers from the operation. Wish us luck.

Kids

Revolution

I bought a Rainbow Loom for my daughter a couple of months ago. If you have kids and haven’t been hiding under a rock for the last couple of months, you’ve surely heard of the Rainbow Loom, which is a very interesting plastic contraption where you can create bracelets with small rubber bands.

As expected, she started very nice bracelets, at first simple and single-colored, but with more time and practice the bracelets became more and more complex, with multiple colors, designs, sizes, etc. She made bracelets for all the family… twice :-).

And one day I came home and she was not doing bracelets anymore… she was doing this:

That’s a strawberry, a banana, and a pencil. Where the heck did she learn to do this? One simple answer – YouTube! She also did an angry bird, a sword, and many more things (I’ll be adding more pictures later)

This got me thinking… This is a revolution. Actually not one revolution but many. Sites like Coursera, EdX, and even the “simple” YouTube are the new printing press, passing knowledge to the masses. And anyone can become a teacher. This is a lot better than the printing press because the starting price of publishing a video in YouTube is very low – just a camera and an internet connection. Probably under $100 using a reasonable quality phone. This is the publishing revolution.

And the second revolution is from the consumer side. Anyone can sit in his home, open his computer, and start learning. From mathematics to social sciences to philosophy to… Rainbow Loom. And you can be of any age and of any gender and of any race. Schools are going to need a radical change. Also universities. And this is a good change that was waiting to happen for a long time.

We definitely live in very interesting times.

Kids

The Desert

What a beautiful place. The silence, the toughness of all the rock around, everything in the same brown color, but not quite the same color.
The desert is all around us, inside us. It is us and we are the desert.

Come to the desert. It’s a wonderful experience.

Kids

Jetlag

We arrived last friday from Argentina: 1 hour drive to the airport, 3 hour wait at the airport, 2.5 hour flight to Sao Paolo, another 3 hour wait, 12.5 hour flight to Tel Aviv, 1 hour to get the car, pack everything and 1.5 hours to get home. Add to this 3 small (< 6y) kids and you can imagine the picture (if you don’t, read this again after you have some).
We are tired, jet-lagged and of course the kid’s biological clock takes some time to adapt, as you can see by my little one’s picture at about 2 in the morning today – eating tuna fish.

Now, at 3:54 I think she finally fell asleep.