Thursday, December 12, 2013

(I have had to change some information in the blog post, it is in italics) Eli has been in a great mood, lots of energy and playfulness, but he summed up my thoughts wonderfully when he said “I hate all this cancer stuff.” Agreed. What a painful day yesterday. Any decision we make is fraught with doubt, regret and a long-shot success. We do have more information now to help make a decision as to what treatment to pursue where. But, it is hard to commit your step to the path when it doesn’t go where you want to go. Our ONC explained more of what St. Jude is doing and what they will do, and he was able to talk about some other trials at other places.
Ready for port placement surgery
We told him about our intention to continue Eli on the homeopathic regimen even if we choose to add conventional treatment as in chemo. He said he doesn’t have a problem with it unless Eli starts to lose weight because he is being restricted in his diet. Well, he is not restricted, he can have anything he wants that is raw - which is nothing he wants. So, a mountain of challenge there, but I’ll get back to that later. I have always kept an ear to some of the other medullo fighters and we were contacted by two individually who are fighting or have fought relapse. One is being treated according to what we feel is a good choice for us, and the other being treated with two of the three meds of that same choice. Statistics are a piece of the puzzle, but direct feedback like that is a rare piece that helped us have the confidence we needed to put our foot on a path. So, with great sadness and dread we allowed a port to be placed in his chest this morning preparing him for a conventional protocol. Again, everything is a hail-mary. St. Jude is using two meds that have not worked, but want to change the infusion rate to see if it would work better because they have had success with that adjustment in the lab - only. It would require that we again live in Memphis, and he would always be on it until his body couldn’t take it any more and the tumors will return.
Eli and John Andretti. He was asked if he would like his picture made with Mr. Andretti and he shyly shook his head no. He was then asked if he would like his picture made with the car and in his quiet voice he said "yes." So, embarrassing.
We will not separate again, so we would all relocate to Memphis. Having heard from these two other parents and having done some other reading, we were able to narrow down to other options one of which is a multi-institutional protocol. St. Jude is familiar with it and has used it in the past.
Eli's class collected books for St. Jude, so we took them to Target House.
 Statistically in general, it has shown some success in that it has added the greatest number of months. It is again something that he will always be on, but what has leaned us to it is that he will be able to do the chemos at our Huntsville clinic and his side affect sickness will not be as dibilitating. We are hoping that with it being milder he will be able to tolerate the homeopathic diet more easily. This cancer is so aggressive and so resilient, we just don’t have the time to wait to see if the homeopathic stuff is going to work. If it didn’t, by then it would be too late to try any kind of chemo. So, there is a breaking point there somewhere between quality of life and quantity of days, and we have to feel for it blindly, possibly sacrificing one or the other
Playing the Wii hanging out at Target House.
 So, the decision with the port, still doesn’t commit us to anything, but one of the meds in the… I’ll call it the MI option… requires that the port be in a minimum of two weeks before it can be given. So, we went ahead with it because we are hoping to go to Disney next week (it’s a surprise, so don’t say anything), and if we waited then that would put us even further down the road to get treatment started. So, we still have a little time to commit to a treatment, and we have requested copies of his records so that we can send to two other institutions to see if they have anything unique that they would propose. So, that’s where we are. Things change rapidly, and we are receiving information almost constantly and continue to consider and gather. But, as it stands right now, we have begun the strict homeopathic protocol, we have had a port placed to receive chemo.
Pool at Target House.
We will go to Disney soon, be back by Christmas for Santa to come to our house, then will likely begin chemo that week at home following the MI plan. We are not sure yet when we will leave Memphis, I’m hoping today. I hate to quickly address your generosity financially and emotionally because it deserves pages and pages of gratitude, but I just don’t have the time. I know that the school kids are exercising their tender hearts and that there is a lot of prayers and efforts being made to help lift some of the burden. Please, know that we know this, we are blessed by it, and are uplifted.

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