Chemotherapy

If you are anything like I was a month ago, you might be blissfully unaware of what “chemotherapy” actually means. Like down to the last detail. You may have a preconceived notion or idea. I truly hope you do not have intimate knowledge about what it means because it’s heartbreaking.

I share because of the outpouring of support and questions. And I can’t give individual updates.

I share because pediatric cancer is unbelievably lacking in funding. This, in my opinion, is not acceptable.

Kai is being treated here at St. Jude on a protocol called SJYC07.

He gets 5 different drugs administered over approx. 2 weeks, a mixture of in-patient and out-patient. It really depends on how he tolerates the drugs. They are nasty and they do complete havoc on his body. They are made to kill the bad cancer cells in his body, but they also kill all the good. They attack his organs, his GI track, they cause infection. The risk factors and common side effects (also the not-so-common side effects) are far too long, sad, and absolutely terrifying to mention. There is no telling how each kiddo will do on them. There’s also no telling if they will do their job. But, it’s our only and best hope of keeping the tumors at bay.

What we do know is they make kiddos sick. We do know, they make Kai sick. He has moments of energy and moments where you can tell he feels awful. And he’s only 8 months. He can’t tell us how he’s doing so it falls on mom to pay close attention and try to catch anything that seems out of the ordinary so it can be treated. But some of the “out of the ordinary” is very ‘baby-like’ stuff so I worry that I won’t catch something. I worry all the time. He cries alot and my heart breaks.

It pains me to explain how sad and defeated I feel daily. And again, this is NOT about me. It’s Kai that has to actually carry this impossible load.

So, we do the drugs for 2 weeks and then (again depending on how he does) he has some time “off”. We will still be at the clinic (hospital) daily, getting tons of tests. He will still be experiencing the side effects, which tend to come along in the long term more often than the short term. We do this 4x’s, 4 rounds they call it. After 2 rounds, they will do a full workup again-MRI on this brain and spine, a lumbar puncture to test his CSF, and a kidney ultrasound. This will help shape the next 2 rounds.

We had 5 days at the hospital for his first drug last week and we are given 2.5 days to “rest” before we start the remaining drugs, we get admitted tonight and Wednesday + Thursday he gets another 3. It’s regimented and he has to take some very important “rescue” drugs orally and I’m not sure if you can imagine but a breastfed baby is not the easiest to administer oral meds to. And they are super important.

If all goes well, then we hit his little body with radiation around his first birthday. This has its own very, very scary risks, but it’s what doctors have seen as kiddos best shot for keeping ATRT at bay.

Basically, Kai and I will be spending most of our time at the hospital, alone, for the next 6 months.

With COVID, St. Jude is a very different place. All of the “extras” that they were able to provide, they are unable to now. Volunteers would wander the halls to lend a hand or an ear. As an outpatient, we are there all day without a place for Kai to nap (hi, he likes to nap) or a dedicated place for me to feed him. If he does fall asleep in this car seat, which he spends WAY too much time in, inevitably he is woken up by someone sticking him or weighing him or etc etc etc.

I want to be so much stronger for Kai. He deserves the very best and I am trying so hard but I’m also falling apart daily, watching him so through this nightmare. Physically, mentally, emotionally, I’m losing it. Without my best friend by my side to take some of this off my shoulders, 1. due to COVID, 2. because he must work to keep us afloat, it just feels impossible. I grieve and cry a lot.

It’s all super draining and I miss Cruz and Chasen all the time. I grieve the days when I had something positive to share and give to the world. I grieve the days of just simple, normal family time.

More than anything, I just miss Kai being healthy. It pains me to no end.