So I have this horrible habit of starting a bazillion posts, but never posting them because I don't feel I have been able to get them right or because they don't feel substantial enough. So I apologize for continuing to get behind on my updates as a result.
Clayton was again HAMA positive, so we will draw his blood again on September the 20th and get those results on the 25th. If the results are HAMA negative, then we will go to NYC the first week of October and do another round of 3f8. If he is HAMA positive, then we will still go to NYC the first week of October, but we will do scans, meet with his back doctor, place a port, and start his acutane. In regards to the port, Clayton has a Hickman right now that looks like this:
Picture coming soon-I have to go to another computer!
He can't have a bath or go swimming or anything with this thing and going to school now with this just doesn't seem like a good thing. That is right, my three year old who has been going through chemo and all that comes with it cannot have a bath and has not had a real bath since last November. Surprisingly he doesn't stink! So our beloved Dr. La Quaglia will replace his Hickman with a port that lives completely under the skin. The doctors still feel it is important for Clayton to have a central line of some kind which is why we are not removing it all together.
As for the accutane, it is another line of defense. Yes, that is the same stuff they sometimes give for acne. It is proven to help against neuroblastoma, so he will take it in cycles of two weeks on and then two weeks off for the next six months.
I think that brings everyone up to date. Oh, and Clayton has been doing OK in school. The teachers were so excited Friday, they said he had the best day yet! Laughing a playing games with them. He has also been babbling a lot more this week! I know some of our family members swear up and down he's saying words, and I'm sorry to burst ya'lls bubble, but he's not. George and I know him pretty well and we swear up and down that he's not. ;) He is just getting better and better with his sounds...so he is close. We know y'all are just hopeful. Oh and that hair, that sweet, sweet little hair is just a growing! Things are going pretty good overall.
Another reason for the delay in my posting is that I have been working on a few things. The foundation I have mentioned before that I had set up years ago, I have been working to make amendments to it's articles of incorporation in order to make it work for pediatric cancer fundraising. I have also had to get an EIN and I am trying to get the paperwork for the 501(c) status wrapped up. All the little (but important) things that will make it functional to do good things now!
I am also wanting to reach out to anyone who might have strong ties with breast cancer community...cough, cough...Nana...cough, cough...The mother of the little Greek boy that was our in patient roomate at one point has been diagnosed with breast cancer in the midst of her son's battle with neuroblastoma. Their insurance of course will not cover treatment for her here in the US. And I can say that as a mother in her shoes with a sick child, the idea of leaving your child to go back over seas for anything with be impossible. So they are going to do what they can to have her treated here, but everything will have to be out of pocket and since their son's treatment is already out of pocket, you can only imagine... If anyone has any suggestions or resources that might could help them, please contact me. If you don't already have my contact information, then you can find me on Facebook and send me a message.
Lots of blood drives this month too. Please find one and donate! Lots of sweet kiddos need blood regularly. And bone marrow too. Sign up to be a donor! When kids are looking for bone marrow donors, they look to the registry, so if your willing, but not on the registry then you might be missing a chance to help.
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