Keep up the fight
It’s May. How on earth is it already May? It’s May 4th and we are inpatient, starting our 3rd round of chemo today. It’s been quite the journey so far. An ocean full of tears, check. A shock wave that still hangs over us daily, check. Some beautiful days and some terrible days, check and check. Let’s start by getting you caught up. I last wrote at the beginning of round 2. I suppose that should indicate how hectic things are around here. The days in the hospital are full of feeding, changing, talking with the experts, advocating, singing, dancing etc etc. and when we are home, we are watching his every move. Trying to anticipate his symptoms and help keep him as comfortable as possible. Hanging with the family and brother!
After round 2, we had more blood and platelet transfusions, that seems to be a constant. We use the medications we have on hand to ensure he keeps feeling ok while he battles the side effects of the chemo drugs. We watch Cruz keep Kai smiling by being a fun and crazy 4 year old. We keep a really close eye on things when his numbers drop and make sure he doesn’t need extra attention. We only had to go to the hospital in the middle of the night once and thankfully, it wasn’t the reaction we thought it was, but something far less scary.
He has gained 2 new teeth and is currently working on at least 2 more. He’s a drooly mess and is chewing on everything in sight. He is crabby and nursing every 2 hours. He is starting to eat like a big boy, which is really fun to see. Finger foods, learning to gum on soft foods etc. He is rolling over and progressing beautifully. I anticipate some of this changing over the next few weeks as he doesn’t feel great, but I’m thankful he had at least a solid week of feeling pretty good.
We received the genetic screening test results, they are negative. Meaning the tumor was what they call “spontaneous”, not in his genes, not inherited, not something we have to watch for the rest of his life in terms of being pre-dispositioned to other cancers. Really good news. I broke down alone in the hospital when I got that call.
The Neurologist team has decided to start weening him off the anti-sizer medication, so we will watch him closely there.
We had our second full work up of scans done since we arrived, 2 months after chemo and so far they are saying he is “NED” or no evidence detected. No new growth. Another great bit of news.
His hearing has not been further damaged by the Cisplatin, so we will continue with that drug.
The teams here are working hard to ensure he continues to thrive and for that I’m beyond grateful. I am provided the tools I need to help him at home and in some ways, becoming an expert on his care.
We will start to talk with the Radiation Oncology team as we finish up this round. We will have one more round of chemo in June and then Kai will be turning 1 on July 1. Can not believe it. At that point, it is St. Jude’s recommendation that we hit the area where the tumor originated with radiation. It will be proton and it will be “gated”. As of right now, they are recommending once a day for 5 days (with 2 days off) for 6 weeks. We are seeking a second opinion and will do our homework to see if this is the route we will take. We have a lot to learn on this matter and if anyone here, reading this knows anyone who knows anyone (you get the picture) please start asking around and reaching out to us.
I’m still scared all the time but I’ve also started talking with a mentor/teacher of mine and that has been a game changer. She reminded me that I am able to heal Kai. Of course, not in terms of his disease, but everything I do for him while we fight this together, is my chance to heal some of the suffering he is experiencing. So now, with every on-the-hour diaper change, every wipe of his tears, every time I hold him and dance with him, sing to him, feed him, tickle him or show him love, I am reminded that I am able to heal him. I am coming to terms with the fact that “this is where we are, and so it is”…” and so it is”. I am channeling the divine energy I have in my soul to Kai, every moment I am blessed to be with him.
I am hopeful for many more days, weeks and years with this sweet boy. I am hopeful. I am also reminded that none of us is guaranteed another day. Another reason why it’s so important to be where you are and take good care of yourself, give yourself grace and love and remember that you have to start with that mind set daily, if not multiple times a day to be present. It’s work. I’m working it.
A good friend came to visit us. She got her vaccinations and booked her flight. She spent quality time with both boys and helped me around the house. We laughed and cried and it was just what we needed. A few days of normalcy. Hearing about her life. Loving her. Was just lovely.
I’m looking forward to seeing more family and friends as vaccinations are finished and when Kai’s numbers are good. That window of time is short in between treatments, but I’m hoping we can see as many people as possible. It was such a good lift for our spirits.
Sending all the love I have to you and yours. Hug those you hold dear tight. Everyday.
One love.