Thursday, October 1, 2015

New York called, and Eli is not a candidate for the phase two trial there. The treatment is a “mop up” treatment, best for when there is no measurable disease. I am thankful we could enjoy our trip in blissful ignorance of that news, as that leaves us with more nothing than the nothing that we already had. We have been in contact with St. Jude about something experimental with the Pediatric Brain Consortium, of which it is a member, along with MD Anderson, and other leading pediatric oncology research hospitals, and then I am assuming we still have the Mayo clinic immunotherapy trial as another non-option option. The first three kids have completed the first round of that trial, and have shown progression, but it was a different brain cancer that Eli’s. They have stopped the trial temporarily for further study. So, I’m kind of numb to Sloan-Kettering’s decision right now, coming off such a fantastic few days.

We all left Los Angeles just before lunch yesterday, and we had to split up for our flights because they were flying home, and Eli and I were flying straight to Houston. (I’m so tired of that leaving. I can’t even tell you how awful it is, especially when it is not my choice. When I tell the kids, that I’ll see them in a couple of days, they - especially Caleb who is feeling the stress of the split and voices his sadness - always asks if I am going to “stay at home this time” when I come. Today was Abbey’s 13th birthday, and I was not there. Cancer is more than a disease of biological tissue. It’s a disease to anything precious. That’s one reason why foundations like Make-a-Wish, The Marty Lyons Foundation, etc., are so important as well as disease research) We arrived in Houston last night for him to receive another intrathecal treatment with methotrexate just to hopefully hold the progression until we can get him into a (no-promises) trial, but it won’t hold for long, if it is holding at all now. He is doing very well otherwise, except for the eating, which we still push to get just bites. We will have this treatment, but I imagine it will be the last time we are in Houston as we need to move on to something else, and MDA just doesn’t have anything for us that we can’t do as a phase one, or palliative treatment at St. Jude now that we are not candidates for the NOAH protocol, and the Memorial-Hermann protocol is over and no one wants to continue it for us (and honestly, I think Eli was experiencing some neuro-toxicity that would have stopped the treatment soon anyway. I don’t think Dr. Sandberg would have admitted that, but the limp and the speech slurring have gotten better since we stopped). We will head home in the morning via rental car….on the road… not in an airplane, that I am not in control of…. not next to people that I don’t know…. not smelling odors of people that I don’t know… not breathing regurgitated air of people that I don’t know…. (sigh) I can already see that if I keep my sanity until I am old, it will not be considered sanity.

Now, that business is out of the way - what a fantastic, and surreal time we had around Los Angeles, California! I have lots of pictures, so I am putting them into a little simple slideshow to make it easy to view, but give me a little more time. I will post that link soon. For now, I wanted to get the information to you. Please, look up http://www.martylyonsfoundation.org, the “wish” organization which is one of the very few foundations that grants second wishes under special circumstances. And, Krystal, at MLF in New York, was wonderful, thought of everything, and was fun to talk with, too. We started off on Saturday to take advantage of Vic’s normal days off for the weekend. We left early, and had time to check out the huge airport fire truck at HSV that holds 3k pounds of water. Those guys were so nice, and loved showing off the equipment. Caleb was not lacking for questions or interest or suggestions. Our flights went pretty well. We had a connection at Dallas, and on the flight into LA, I sat beside an older latino woman that I think was frozen from fright, not sure. I helped her put her tray down for a drink, and when I passed her cup of ice to her, her hand was shaking like she had been hit with a taser gun. I took her soda from the attendant and poured it for her b/c if I didn’t, one of us was going to wear it for the next three hours. The rental line for the car was, really, the worst part of the whole trip. We were there almost three hours, and we had a reservation.

Time was on our side because of the zones, so we had time to eat somewhere kind of cool before finding our hotel in Burbank, California, where our wish target, Jay Leno’s Garage, was located. We stopped in the Noho arts district in West Hollywood to eat “fire pit” pizza, and literally, the pizza crust had black dust on it. We were dressed in our Auburn, Alabama, and Tennessee college football t-shirts, but not one “War Eagle,” “Roll Tide,” or “Whatever Tennessee people say”. Looking around puzzled, I thought “don’t these people know it’s Saturday in September? This IS really another world out here.” That was the first day, and not the only time that thought crossed my mind during our trip.

The hotel was new, exceptionally nice, we even had two rooms. The kids were excited to not sleep three cross-ways to a bed. Plus, with two rooms, that meant we also had two bathrooms. BAM! Now, that’s a vacation! We woke up to beautiful scenery, surrounded by sandy mountains, in Burbank. Sunday morning, we attended worship with the Burbank Church of Christ, and then ran into the preacher at Subway for lunch and had an extended visit with him. He was from Florida, preached in Miami, Tampa, and Pensacola. He had met Mr. Fudge, one of the founders of our school, and his wife was in the first graduating class at Florida College in Tampa, where I attended for my first two years. This little church needs our prayers as it desires to grow, and the Christians there wish to serve and evangelize within their community.

After lunch on Sunday, we toured the Warner Brothers studios. That was simply fantastic, beyond what we were expecting. We had a personal tour, but didn’t really do anything that others weren’t doing except that our tour guide took a lot of time (answering Caleb’s questions and listening to his suggestions) with us, and let us get out of the tram and walk around on the lot, showing us the inside of the fake buildings.

We walked along Hennessy Street, the city backdrop for numerous movies and TV shows, including the older Annie, ER, Spiderman, Friends, just a massive list. We visited the Mid-west lot, which was used in one of the Muppet movies, Gilmore Girls, and currently in Pretty Little Liars. Out of the numerous sound stages, we got to see what was currently set up for Two Broke Girls. Also on campus is a museum of Batman props, and Harry Potter props, plus the Bat Cave, which houses all the original Batmobiles, including the one from the movie yet to come out, Batman vs. Superman. We wrapped up the experience with Stage 48, which was a museum with hands-on activities… oh, and a gift shop. The best thing in the whole place, Ross Geller’s leather pants from season five episode 11.

Monday, we did a couple of things just to say we did, like see some of the Walk of Fame, drive on Hollywood blvd, and get our picture with the Hollywood sign. We parked at Vine Street and Hollywood Boulevard to look at the stars on the sidewalk near that intersection. It was interesting? I guess, or insane? or scary? Not sure which word is appropriate, or all. A wide variety of people passing by, and the business establishments were … interesting? insane? or scary, again, whichever or all. We were walking along, and Abbey and Caleb started pulling on Vic asking him something. He stopped and said, “hey, the kids want to go in here and look at costumes.” He was serious. I had to stop and look at him in the face to know that he was so naively serious, “Absolutely not, not ever, keep walking.”

Our tour of Jay Leno’s Garage was that afternoon. As I said before, we were asked not to post any pictures. But, it was amazing. He has many one, two or three of a kinds. Walt Disney’s car, Howard Hughes’ car, Paul Newman’s car, Dean Martin’s car, the founder of Buick’s Buick, Jay’s beloved Rosebud, a 65 Ford Mustang Shelby 350GT autographed by Carroll Shelby, and just on, and on. A lot of unique vintage vehicles, too, with an obvious interest in preserving history. In general, throughout the collection, some vehicles are restored original, some are as-is original, some are supped up just to be fast, or to be loud, or to be fast and loud. Our tour guide - sweet little old guy whose name escapes me, but he was fun and a personal friend to Jay - said that’s how Jay likes his cars, fast and loud. Eli also got to see vintage Bugatti cars, which is one of his fav foreign cars, as well as Maserati. It is a working garage, with mechanics and restoration in progress, so we got to see some of that as well.

We ended the day attempting to go to Hard Rock Cafe on Hollywood Blvd…. attempted only as far as we drove by it and decided no. It was so crowded out front and along that part of the street with the scary, yucky kind of interesting people. For example, there were a lot of people in costume, and some in superhero costumes, like one lanky pot-bellied guy in a faded spiderman costume “encouraging” young women to take pictures with him. That was just one guy of many that happen to be standing near the curb that I could see clearly. So, we opted to try Universal City Walk, which were the shops and restaurants leading into Universal Studios theme park - much more our style, and there was a Hard Rock Cafe.

On Tuesday, we took a chance with an amusement park that we had never heard of, but evidently is a big deal, and it is! Knott’s Berry Farm was every bit as great as Disneyland would have been, I think. There were so many rides, not the pseudo rides that Disney sometimes will try to pass off as a ride. There was no crowd due to the mid-week day, the workers were polite, helpful, everything was clean, and there were so many roller coasters that we could not even get to them all - big, crazy roller coasters. Although the kids just turned around and rode most things twice while we were in front of one. Eli rode some things, not everything. There were plenty of family rides, and Caleb is just tall enough to ride anything he wants with a companion, so we didn’t have to split up with half going to the kiddie side, and the other half to the regular side. And BONUS! Snoopy and the Peanuts Gang are a big part of the park. Snoopy didn’t have the same creepy vibe as the faded Spiderman.

The girls and I got up about 0600 Wednesday to hit the road to just see things so we could say we did. We only had three hours because our flights were scheduled for after lunch, and flying out of LAX would be quite different from flying out of HSV. So, we drove down Rodeo Drive, Sunset Blvd, through Beverly Hills, down Highway 1 to Malibu. We had to turn around due to traffic build up on our return drive, so we didn’t make it into Malibu proper, so the drive wasn’t quite what I was hoping for, but we saw Pepperdine University, and we did drive back via Malibu Canyon, which was awesome.

So, that catches you up to today. Eli had his intrathecal methotrexate today at MDA, and our oncologist here was surprised that New York had turned us down. After learning that New York was not an option, he also suggested the trial with PBTC, even though MDA is not a member. The only reason they suggest it is because we can get in it quick because Eli is already a St. Jude patient, and we can do it at home. It is oral. I don’t know if I understand it, but here is my best shot. There is a protein that suppresses the body’s immune system allowing cancer cells to grow, and this med would block this protein and stimulate autoimmunity. It has only been used in melanoma, and the PBTC is wanting to expand that research to other cancers. No success in medullo, so we would continue our pioneering. But, our MDA on is also suggesting that we pursue the Mayo clinic and be prepared to do it next. I am expecting that Eli and I will go to St. Jude next week for St. Jude to have baseline imaging done and get us going on it. But, I don’t think we have heard the exact plan yet.
So many parents are looking for relapse treatments, after our kids have endured and literally survived horrible treatments. It seems ambiguous and broad, but add to your prayers that a new kind of treatment such as immunotherapy is successful, not just for Eli, but for all these children that are having to fight for their lives from the destruction of the treatment that exists now. Thank you all for your support in all ways always.

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