He is having another CT scan done now just to check and make sure everything is in place ok. Everything went well and he is doing fine. They said actually, that everything went "perfectly" and he did "great". He was intubated for the surgery and as soon as it was over, he began to wake up and breathe on his own.
He had to have the Hickman catheter placed instead of the portacath (the one that goes under the skin). The Hickman is a long, thin tube made of silicone that is inserted into one of the main blood vessels next to the heart. One end of the line remains outside the body and acts like a permanent IV. All the medications he is currently receiving can be given through the line. His chemotherapy drugs will go through the line, and blood can be drawn through the line. The really good thing is that there is always intravenous access--no more sticking ever again while this thing is in place. The drawbacks are that because the line is always outside the body, chances of infection are greater, it must always have a sterile dressing and be flushed or irrigated daily. It can't be submerged it in water, so baths will be a little trickier, but we will learn how to do it. Also, his swimming career will have to be put on hold for a while, but that's ok :-)
His veins are too little to support the portacath line. As young as he is and with all the trouble they've had with his veins anyway, I was expecting him to come back with the Hickman. It's ok, the important thing is that he is doing well.
So, now his Hickman is in place and his shunt is in place. They will probably start the chemotherapy this weekend (probably Saturday). The first doses are given over a three-day period. We're hoping he might be able to come home late next week sometime. Several of the chemo doses are in-patient but not all of them. We will learn more about it over time. I have the schedule for the treatment protocol.
There are four different medicines that he will recieve and they group them together in 3 groups A1, A2 (which are different doses of the same two medicines) and B which is two different medicines. The B group of medicine is the most toxic and are the ones which cause more of the worst side effects. During the first four weeks he will recieve A1 medicines once a week. The second 4 week period, he recieves A2 once a week for 2 weeks and then gets two weeks off. Next is the B group of medicines which he gets three times in one week, has an evaluation, probably CT scans and MRIs (blood tests are given throughout the treatment time to check his blood count and other things). Then he will start back the very next week with A1. Then the schedule of delivery changes again.
It's a lot of medicine and a lot of time spent with the pediatric oncologists and at the hospital. With the working schedules we both have now, one of us will be able to take him every time--sometimes they will be on the weekend and we can both be there. The schedule varies over the 70 week period, but as I said, he may not get it for all those weeks, it just depends on how things go.
I'm sorry if this is all a little confusing. I think I'm also using this format to try to understand the whole thing myself--on a lot of different levels. I will give you more information on the medicines themselves and the side effects if you want it. One thing that's interesting is that the most toxic of the medicines is Cisplatin which is basically liquid platinum. Funny how desirable platinum is outside the body. Don't swallow your platinum wedding bands. Just kidding--I don't think that would hurt you--but for sure don't melt them down into liquid form and inject them into your veins. Cisplatin's partner is called Cytoxin whose name just sounds evil. It's like a the name of a comic book villain who has one eye that shoots poison or something.
BUT--they will all work hard to kill any cancer cells that may be left behind or that try to sneak back. Which we will not allow. It's just that he will have to be sick and nauseated and have stomach pain and metal taste in his mouth and low blood cell counts, possible hearing loss (cisplatin), constipation, muscle weakness, etc. and he will not be able to tell me and will not understand why is goign through what he is going through. Or maybe he does understand on a level that I cannot. I don't know. He seems very content and looks very much at peace. And he looks wise--very wise, as if he knows something that we do not. Which I am sure he does. This is all something we all are just having to live through. Somehow we will do it--we are doing it. And after it is done, it will be done and he will continue to be healthy and strong and alive and happy and cancer free. I know it.
One more tidbit of information--did you know Clorox kills cancer cells? but there is no way to get it into people without it killing them too. Add that to your trivia knowledge base--it might come in handy someday.
I will give you more updates as they come along. We are all doing ok --as ok as we can. I'll let you know tomorrow how the baby boy is doing and what the doctors say about starting chemo.
Love to you all---