Cycle 3
We tried to cram in as much normal life as we possibly could. Living with cancer shifts your life incredibly. Living with cancer and covid both is particularly difficult. While kids with cancer don’t seem to struggle life threatningly with Covid from reports our nurses and oncologist have shared, the hypervigilant screening and rules makes it imperative that our family not catch anything. Any respiratory symptoms could mean I can’t be with Liam in the hospital or that his treatment gets delayed.
Our social life has taken a phenomeal hit. It’s hard on all of us, but especially so on Adam. Staying at home isn’t exactly the way you envision spending the year you turn sixteen. We’ve tried to create as many opportunities for him as possible, but it’s often not an option. Liam had a three week break during the time we were getting surgical consults. He should have been having surgery; but our insurance was so inept it was almost impossible to get out of network coverage.
In retrospect, he should probably have gone directly into cycle 3 instead of having a break. But in all of these things, David and I have chosen to firmly believe that God was doing a work through the delay. That in Liam’s body it would create greater kill, not lesser.
God was so gracious and gave us glorious, warm fall weather. He was often outside in short sleeves and sometimes barefoot. It doesn’t feel like you get much vitamin D in November in Virginia, but you certainly get more outside than inside. It was a huge gift. Better air quality. Immune building. Exercise.
On Thursday we took him in for cisplatin and doxorubicin again. It is a wicked combination and something I will always wish could be forgotten, but I know it won’t.
The dread. Prehydration. IV emend. IV zofran. IV benadryl. Periferal IV and BAD (benadryl / ativan / dexamethasone) drip started. Doxorubicin for fifteen minutes. Red koolade like poison snaking into his veins for fifteen minutes. Four hours of kidney protective mannitol. Four hours of evil cisplatin. Hours of hydration and vomiting only to start the same process again on Friday. And then continued hydration and IV meds until he can swallow pills and keep food down so we don’t risk coming back in through the ER.
I hope it’s far more lethal to his cancer cells than his heart, hearing, and kidneys.
By now I know what to pack. I’ve quit taking school work along except to do a math lesson in clinic before it starts and often a spelling test. And then I know he’s going to hunker down and not want to do anything / not respond much to anyone until it’s over. He tries so hard to be polite but there is no zip in him until it’s over. As soon as his smile returns I know we’re out of the woods.
The diffuser is a MUST to mask the smell of hospital. His association nausea is so strong he can throw up from that alone.
Saturday evening when he was feeling better I was sitting beside him in the bed as he played Word Feud on his iPad. I was scouring the internet like usual when I stumbled across an article from a few years ago about how Dr. Prince had used an external fixator to regrow bone in in patients with osteosarcoma. “Look!” I squealed to Liam. He read with me. Patients regrew their one bone and had no physical limitations on weight or running as far as the bone was concerned. I realized Dr. Prince was a colleague of Dr. Healey, the surgeon we were scheduled to see the following week.
This time he got discharged on Sunday afternoon which felt like a miracle! One and half glorious days at home! Except not really at home. Monday we had to go back to clinic. Liam was feeling so awful from the delayed nausea from cisplatin that he vomited as soon as she flushed his port. He had to get a neulasta shot to help his cell counts.
The neulasta always makes his bones ache.
We do lots of baths to help support his body when he’s home. 4-5 x a week minimum and sometimes every day. I add 2 cups of epsom salt, 1 cup of baking soda, 6-8 drops of lavender and 6-8 drops of zendocrine. Some people choose rosemary and juniper. They always seem to help him feel better whether it’s nausea, achiness, or extra tired.
I used to read your blog alot then life caught up and I hadnt been on here, I was crying yesterday catching up on all that has happened in the last few months. We are praying extra hard and keep clinging to your Saviours hand.
Thank you so much!