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.
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.