November is coming to an end, and it’s been a pretty great month for us! The only medical stuff Niko had were some check ups and that round of scans which brought back pretty decent news.

And even though we are still living in this cancer mess, I can honestly say – we are doing good. I would even go as far as to say that I am happy, very happy. Funny how it works out, but it really is all relative. Let me share my secret ;)

You see, in the beginning he was so sick – I didn’t know if he would ever walk again or if he would even make it to his birthday. I blocked out all thoughts of Christmas, which was still over 6 months away at that point, and just focused on us all getting home from the hospital together. When so much of your life derails – you deal with it one tiny portion at a time. I guess it’s kind of like moving – you have to figure out how to live in this new place and start to unpack…

When there is a chance that something wonderful in your life can come to an end soon and there is absolutely nothing you can do to stop that from happening – the only thing you have left is to enjoy the heck out of it, and soak up every drop of joy it gives you. And that’s exactly what I’m doing with my time with Niko. Every day I see him run, laugh and eat – is pure joy that I was prepared to never experience again. And I make sure that every night, when I am going to sleep – I can honestly say, I maxed out our fun time. And we don’t have to go anywhere or do something super involved (we usually don’t go anywhere anyway, being so scared of germs now). Most days we just hang out at home, in the back yard and go for a walk. We read books, watch movies, cook stuff, swing, ride bikes and scooters, blow bubbles, play, clean up, and video call relatives and friends all over the world. In a way I kind of feel like he’s living the Rapunzel life (minus the hair.. Since he still doesn’t really have much of that), but if it keeps him safe and helps him get through all this quicker and easier – it is a small price to pay.

I feel like we’re living in a bubble, and whenever I am out of that bubble – running errands by myself and what not – that’s where the depression hides. When I am reminded of the things we’re missing out on. But when I’m in the bubble – I don’t miss those things and all is fine. My point is – there is something nice in pretty much every situation. So – cheer up, butter cups! Be happy today, you never know how crappy tomorrow might be ;)

Monday update

Everyone (under 18) was asleep today by 8 pm. That is an unbelievable, unprecedented moment. And that means I can get started on my Monday Update a bit earlier than usual!

Niko actually fell asleep at the table!

I guess we wore them out. =)


So – how Niko is feeling – overall I would say pretty well. His appetite is back. He had a little belly popping out today already. He is still a bit touchy and fussy, more than his normal self, so we think he might have some pain. He has to take iodine drops daily for 6 weeks after his MIBG treatment, and he does that now like a total champ – with no complaining or protesting AT ALL. Luckily – this new medicine tastes like blueberries and he actually likes it. This is the med that came from UCSF, and the one from Kaiser before had no extra flavor and tasted horrible! In case you’re in a similar situation – we figured out it was easy to hide in strawberry kefir, or a red berry-boost-something Odwalla smoothie.

His labs on Thursday showed that his counts are dropping and he is already neutropenic. So that meant – no fire station visit this weekend. We will check his counts again tomorrow and maybe we’ll get to go later this week! The firefighters that we met (I wrote about it on Instagram) have invited us over for lunch or dinner at the station, how incredibly nice!

During the day, after breakfast and during Luka’s nap, Niko and I “play school”. And he is actually really enjoying it! Some things he likes more than others of course. I’ve been learning a lot about the Montessori method and have started introducing some of the concepts and he is getting into it way more than I expected!

What’s next? We’ve got a check up in the middle of this week, lab work – as usual, and we are scheduled for his transplant to start in early December. But that is dependent on the results of scans that will be done after the MIBG treatment (which are scheduled for Nov. 12th btw). He needs to have very little disease left when he goes into transplant. So – if there is still more than the set amount – we’ll have to do some other treatments first.

Ok, no more illness and cancer talk for a while! Hope everyone has a great week!


Tomato boy

I really like tomato soup. Oh, there’s this one place in the city (San Francisco that is) – I haven’t figured out which days it’s their soup of the day, but they make a heavenly tomato basil! But it’s kind of a different story when your kid smells like it! So much so that now – it’s wafting out of his room and into the hallway!

This morning we had to wake him up around 7 am (which is early for him) and of course he knew where he was headed and – he definitely did not want to go. In fact, he kept saying over and over that he “can’t go”. But  – it was completely out of the question. He got a dose of the stem cells that were harvested from him in July – to help his bone marrow with the effects of the MIBG radiation treatment. It is supposed to hit much harder than chemo so – the bone marrow stimulating shots alone are not enough. It was a one day procedure like they told us. But I wish they had also told us that it was a FULL day procedure – there’s 6 hours (!!!) of pre-hydration, the actual infusion itself is maybe 30 minutes, followed by another 4 hours of post hydration. And discharge from the hospital depends on having two urine samples with no traces of blood. Apparently – it’s very common, and turned into a small delay in our case. Luckily he could walk around the room that whole time, didn’t have to be in bed, and could have probably gone to the play room during the hydration part if he wanted to.

The preservative that the cells are kept in – smells like tomato juice. And makes him smell like he only bathes in V8. :)

And now tomato boy is at home, in his own bed, asleep. And he even got a duplicate Teddy from child life – identical to the one that comforted him during his hell week of the MIBG.

And in final news for today – we are scheduled for his stem cell transplant in the early part of December which means Christmas and New Years will be spent in the hospital. Is what it is. I think we all need just one gift this year, makes sense to be at the one place we are more likely to find it!


Monday update

It’s now been two weeks since Niko was admitted for his MIBG treatment. It’s been a rough road – after the week long hospital stay, Niko was only home for a 2 nights before heading to the emergency room for stomach pain and vomiting. He was definitely completely blocked up. It was a pretty scary time.
But – this is not at all my main point today.

Today was the first day we saw our Niko back! Whenever he is in pain – he turns into this angry, grumpy, highly sensitive and really difficult and mean little person. It gets ridiculous at times when – he’s so angry he tells us not to watch what’s on TV whenever he’s watching it. Or – not to look at him, or that we eat things wrong, etc. And yet – it seems like he needs that anger, it acts like a survival mechanism for him. It gives him the strength to get up and push us out of the room, or try and punch someone or take something away…
And it is difficult because – of course he is difficult to deal with, but you can hardly blame him. And I always tell myself that our regular sweet boy is still inside there. Which only makes the magnitude of his pain and suffering scare me more.

But today we saw the first smile! Some mischief, some fun, some learning. We got our boy back! Tomorrow he has to go in for a stem cell infusion, hopefully it will be quick and not dampen his spirits too much.

Neuroblastoma and the Power of Targeted Radiation

Hi! I’m Tony, Niko’s dad. I asked Natasha if I could guest-author a post about the treatment Niko recently finished at UCSF, both because I think it is scientifically interesting and because I’ve had a few ask for more details.

I’ll start by saying that I learned a lot during the week, both about cancer and about radiation. I’ve also now had a lot of experience keeping a spirited 3-year-old in complete isolation for a week, which is incredibly difficult and hopefully none of you every have to experience it. First a little bit of background. I remember first learning about the substance called MIBG when Niko first got diagnosed. In a nutshell, it is the radioisotope of regular iodine (I-123), and localizes to neuroblastoma cells. It is therefore the primary tool used to study and monitor a Neuroblastoma patient’s disease.

Example of an MIBG Scan

So far Niko has undergone 4 MIBG scans – the first at time of diagnosis (baseline, disease assessment) and the others all for the purpose of checking how his treatment is progressing. As you might imagine we’re always on pins and needles while we await the results of one of these, since they tell us quite definitively how the treatment is going. A day before he’s scheduled for a scan, he’ll go down to ‘NucMed’ (nuclear medicine) where they have a carefully dosed injection of I-123 ready in a lead-lined case. They inject the substance and give it 24 hours to make its way to all of the neuroblastoma cells in Niko’s body. The following day they put him into a specially designed camera that picks up on the isotope, producing an image similar to what you see on the left. In this example the patient has MIBG uptake in the left adrenal gland, signaling that is where the cancer resides (typical for Neuroblastoma). You’ll also notice that the thyroid (near the neck) is “hot” – this is because your thyroid naturally absorbs iodine. The bladder gets any of the waste I-123 that doesn’t get absorbed. The end result is a fairly good visual study of where the cancer has spread.


Niko’s MIBG IV dose encased in lead

When Niko was diagnosed and a bucket full of cold information was dumped on our heads, they called the extent of his disease and scan “disgusting”. Since his disease was very progressed (stage IV, see staging) they also mentioned a new clinical trial studying the effectiveness of treatment for high-risk Neuroblastoma children using this same MIBG concept. It is based on the premise that by using a similar compound, but with a stronger isotope, I-131, as your transport mechanism, you can radiate the cancer cells wherever they are in his body with a targeted approach. It is commonly referred to as MIBG Therapy. Procedurally it works like the scan, except that the MIBG injection contains a far higher dose of radiation (252mCi vs ~1mCi scan dose). This is because the goal isn’t to just pick up the radiation with a highly sensitive camera, it is to eradicate the cancer with heavy radiation. You can see a photo of Niko’s dose being prepared to the right by a radiopharmacist.

The amount of radiation used in this therapy is through the roof. Seconds after Niko was infused with his dose, his little body was emitting 0.37mSv/h of radiation at 1 meter away. To put it into perspective, this means that he was emitting the same level of radiation that a person’s recommended limit of exposure is for an entire year in just 3 hours. Get closer than 1 meter and the levels skyrocket. For this reason, once he had received his injection Niko was deemed “hot”, and a bunch of stringent precautions were put in place. It is actually spectacular to imagine the thousands of radioactive particles blasting out from his body like beams of invisible light, passing through everything in its path, and of course hopefully the cancer cells.

The room itself is specially designed for this treatment and has lead-lined walls and floors. He is kept behind a 3″ thick lead shield for the entire treatment and everything in the room gets covered in plastic to prevent radiation contamination. Since we’re dealing with Gamma radiation, you can’t inhale it, but it can easily pass or “contaminate” through liquids. We got extensive training on avoiding contamination and keeping our exposure limited. Before starting the treatment they had placed a catheter and setup a pump to push his urine out of his bladder and the room continuously. This is because a high concentration of the radioactive I-131 is expelled in the urine and since his bladder is healthy, you want to avoid radiating it. Entering the room is an entire process. You have to put on a protective layer including “booties”, an apron and a double layer of gloves (see my getup in the gallery below). This is to prevent getting any radioactive contaminants on your skin or clothes. You’re also required to put on a dosimeter to continuously measure your exposure, which gets documented in a log and closely monitored by the radiation team. Anything you bring into the room has to stay there, again for risk of contamination. As his caretaker, you’re responsible for keeping him comfortable, feeding him, keeping him occupied and giving him medicines. The nursing staff is only around for IV maintenance, remote observation and any emergencies that arise. Grandma, who also stayed at the hospital, was also there to help. I would say the biggest challenge was keeping him comfortable and calm, especially when the side effects began to kick in. As part of the clinical trial (NANT-2011-01), Niko got randomized to arm B; one of three arms which also includes chemotherapy while he receives the MIBG therapy. The theory is that the chemo amplifies the effects of the treatment, but of course adds to the already huge list of side effects.

Though it was an incredibly hard week, the staff did what they could to make things comfortable for the kids and the parents. They put him on a sedative designed to keep him calm, and to eliminate anxiety. They had a mirror in the room so he could see and communicate with us from the hall, hopefully reducing the amount of time you spend actually in the room while making it feel like you’re nearby. He also had a huge TV which as you might imagine was crucial in keeping him distracted. Chromecast was an absolute essential here, because it allowed for me to remotely start whatever media he wanted, including home videos and photos.

Cisco Telepresence 2-way video

Cisco Telepresence 2-way video

There was also a two-way video system, with the other camera setup in the Family room as you can see in the photo on the left. We kept his video rolling the entire time so we could observe him, and hear him waking up at night, which was really nice. You of course have the option to put your camera feed on his TV, but this tended to upset more than pacify him. He had two nurses on his team at all times, one for general care-taking and the other from the PICU (pediatric intensive care unit) who’s sole responsibility was to monitor him while he was on the sedation. They do this from a “control center” by continuously monitoring 4 special video cameras installed in his room and a remote feed with all of his vitals. This nurse also helped a lot with keeping him comfortable, responding to any of his needs and backing up his care nurse. All of the nurses he had were wonderful, and experienced in the special treatment.

I think the hardest part was not being able to hold and hug him. There was times were he literally begged me to “give him a hug”, and I couldn’t do it. It broke my heart. But he is a smart child, and he understands that it isn’t because we don’t love him, but that he is sick and has medicine making him better that is dangerous for others. Mom did an amazing job of packing goodies for him, wrapping a bunch of toys for him to open and keep him busy. At the end of the treatment, when his radiation levels are below legal limits, anything he had in the room was scanned, and items testing “hot” were left for them to hold in quarantine. For this reason they recommended not bringing anything you care about losing for 3 months.

It’s done, he was incredibly strong, and with any luck the treatment blasted the life out of his cancer cells. I expect that this will make it to mainline treatment for any child with high-risk Neuroblastoma very soon, so hopefully Niko’s contributions to the trial and my account of the experience will help other children and parents in the future.