Today we started Kai’s 3rd new chemo protocol in 13 months…
We really NEED this one to give us something as we are running out of options and time for Kai. His tumor is growing in a really bad spot, and while it is not growing aggressively the consequences of ANY growth in this area are significant.
As apprehensive as I was, I decided it was best to go all out and take their suggestion of the 5-drug oral protocol. For Kai they decided it would be a good idea to also have him continue on the bi-weekly IV dose of Avastin that he has been on. While one advantage for most families on the 5-drug is they only go into the clinic once a month, WE will still be in every other week for the Avastin…and to be honest I am ok with that. Not going into the clinic was one of the things that made me nervous about the 5-drug, so I am a bit relieved we will still have many eyes one him anytime we need.
So today we went in. He had his IV Avastin and his monthly antibiotic. While he was getting the infusion the doctor and nurses went over all of the at home drugs with me. This is pretty nasty stuff and I have to take careful precautions to keep myself and the rest of the house safe from these drugs. We were sent home with three bags full of stuff. Everything is one time use and must be placed in a biohazard box and returned to the clinic for disposal. I have to wear a mask and gloves and cover my ‘work’ area with a disposable cloth. I was instructed not to open the capsules or crush the pills near a fan….yet I’m supposed to then dissolve these drugs in water and push it into my sons stomach…and AGAIN this is supposed to somehow HELP him…we can only hope at this point.
This week I will be packing up our cloth diapers for a while. We held out this long, but some of these drugs are just to scary to just wash away in the washing machine…hopefully we will be able to use them again someday. I know this probably sounds like such a stupid thing to be mentioning, but our diapers are one of the last pieces of my pre-chemo mommy life I was able to maintain. As many of our baby friends are exchanging their cloth for potty training, it is a bit hard for me to realize have to let go of both for right now.
But we will adjust. After they explained it all to me today, this 5-drug does not seem to be as hard as I thought. I really only have to give him one med in the morning then all the rest can be given together before bed. I was so afraid I would be captive in the house giving meds every few hours, so it seems a bit more manageable to me today. Of course this schedule doesn’t include all of his ‘as needed’ meds that may be sprinkled in throughout the day as symptoms arise, but we will deal with that as it comes.
It will take some time to figure out the right dosing of the new drugs that will be tolerable for Kai. Some of these drugs have sedative qualities and others have the typical nausea, vomiting and low blood counts often associated with chemo. We are likely in for a ruff few weeks while figuring out the correct does, but his team is confident that once we adjust the meds specifically for Kai he will tolerate this protocol well. I hope they are right.
Title: Individualized Treatment: Oral 5-Drug Regimen (Thalidomide, Celecoxib, Fenofibrate, Etoposide and Cyclophosphamide) PLUS Bevacizumab (Avastin) in Patients with Relapsed, Progressive or Refractory Cancer
Introduction
It has been explained to you that your child has a recurrent, progressive or refractory tumor that has grown through, or not responded to, all previous treatments. After discussion with you and the medical team, a combination of oral and intravenous drugs would be an appropriate treatment option. Although we feel that the likelihood of cure with these agents is very low, we feel that it does offer the possibility of shrinking or stabilizing the tumor.
This treatment includes antiangiogenic therapy and chemotherapy given in a metronomic schedule at low doses that targets both proliferating tumor cells and endothelial cells, and minimizes toxicity. Every two week intravenous bevacizumab in combination with continuous oral thalidomide, celecoxib, fenofibrate and low-dose oral chemotherapy with etoposide and cyclophosphamide will be used.
Keikikai 
Kerri,
It was so nice to meet you and Kai at camp!!! Sage loved having him in the tot lot with her. We viewed the CD from camp and she got so excited when she saw pictures of him.
I know this was a difficult decision for you, but you have made it and can move forward now with the protocol. I will be hoping and praying this is the protocol that Kai needs and that it doesn’t take long to get all of the dosing schedules and increments perfect.
We will be thinking of you guys in the coming weeks as you settle into this new protocol!
We will be thinking of you and Kai and praying for good results with this new protocol. We are glad you enjoyed Camp Sunshine , it is a magical place for all of us. And I understand about the cloth diapers and the pre-chemo/brain tumor life….it is very difficult.
Always with hope,
Melissa and family
Kerri, I continue to pray for you, Kai and Mark. I pray for strength and courage to fight for your boy any way you can. I also pray that the schedule and dosing of these meds can be determined quickly and effectively. Sending lots of Love
Jen Morin
Keeping you all in my thoughts as you move forward with this new protocol, and hoping you’ll feel peace with this process and see the best results possible. Lots and lots of love to all of you—Allison H.