Wednesday, January 27, 2016

Pretty slow at the Williams's house as far as facebook-worthy happenings. Eli continues to feel good,
is very active, eating pretty good. We met about starting him on a palliative chemo (etoposide) this week, and we started the hospice process (just paperwork kind of thing, to get in their system). I continue to look for treatments that we haven't done, that he could tolerate, and that have some kind of potential for his specific cancer, even if that potential has only been in lab rats so far. There is just nothing. Someone suggested looking overseas, but there is nothing for his type. I am on a meddullo fb page, and many parents from other countries try very hard to get to the US for treatment, or many are only doing what we already do in the US, so I "deduce" from that and from my own searches that the US leads in this area. But, I have not actively contacted any treatment centers overseas. We are talking with Johns Hopkins about a new drug, but it is questionable that it would be for Eli's type. It would be the same as the last drug in that they are just exposing it to as many types as they can to see what it might affect. Mayo Clinic still has a viral therapy, but it is closed for about six weeks, and I'm not sure Vic would agree to do it anyway. He's mostly just humored me as I pursue it. Many have asked about a time guesstimate, but until Eli shows some type of symptom (headache, seizure, double vision), we can't know. Right now, he is having no problems, and we make sure he and the other kids always know that we are always working toward a cure, and finding a treatment. We keep positive about our days, and about treatments, whether it is palliative or curative, that's all they need to know right now so that they can enjoy their days. And, until we start the etoposide, we can't know a time guess anyway because some kids have done well with it, adding many months. I suspect that Eli's bone marrow will struggle, so he will not be able to be on it very long. So, we could be looking at as little as two
months, or as much as eight. But, what we are actually looking at is a little boy who is enjoying his days, and we are enjoying him. We (my friend Beverly) have been working on the Mustang room. It is painted gray now, and we have finally sent many posters to be framed (ugh), hung some things with more to go. We won't move the pinball machine in until we are done hanging, and the 17yo green couch will have to stay for now, or a while, or forever. The walls will pretty much be filled up, and some posters will go up to the boys' room because we had so many. Other fun stuff for us, Vic and Eli are wanting to upgrade the wheels on the Mustang, so they have been looking at rims, trying to get him to choose what he likes, but we've looked at so many now that it is getting overwhelming. Be sure to mark May 14th down as Eli's car show, and if you know of or have contact with any kind of specialty cars, like the General Lee, or the Love Bug, or race cars, just fun stuff that we can feature, please let me know. If you would like to sponsor it, or be a vendor, let me know (we will have both selling booths, and we offer free booth space for promo and demonstrations, no selling, and we are looking for kids activity booths). It's a fun day, even if you don't like cars or know much about them. We have live music, food, vendors, etc. And, remember to order an Eli shirt (these are not for the car show, just general Eli shirts) if you want one or if you have worn out the one that you have. This is not a fundraiser, just to replace the shirts that we ordered years ago (these are the Eli the Eliminator shirts). They are $5.50. To order, please click on this link ( or copy and paste it into your browser, and fill out the form so that I can keep it organized. I will ship, just add something for shipping, just guess. You can mail a check or use paypal, instructions are on the form. We will collect until February 15, so that if there are any groups, they have time to pass it around and collect. You can share it with whomever you believe would be interested.

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