Thursday, March 19, 2015

The kids got soaked at Legoland.
So, sorry, no frills in this one. I may not even proof-read…. yes, I actually do proof-read my stuff. I was sitting in the third hospital in three days today. St. Jude on Tuesday, Decatur General on Wednesday, and Madison today. I’ll work backward. Vic had a little exploratory type procedure today to find the cause of spasms in his esophagus. He has a knot in his chest and has been having some episodes eating during which his throat would close up and he would throw up and choke. It was scheduled for last week, but with our spontaneous vaca, he moved it to today. His esophagus was constricted, so they stretched it. And, he had some inflammation due to acid reflux that had irritated it. The biopsied the area and gave him an anti reflux med. Yesterday, about lunchtime, I got a call from where my mom lives that they were taking her by ambulance to the emergency room with stroke-like
We didn't get to see the real Daytona Speedway, but seeing it
made out of Legos was pretty cool.

symptoms. (She has high-functioning dementia and lives in a secure assisted living facility) So, I put my chick-fil-a in the fridge and took off. My sister is her main care-giver, but she had almost literally boarded an airplane to go to Arizona for the rest of the week. Of course, with Eli at home and his next treatment up in he air, we like to avoid known areas of extreme sickness - of which an emergency room and hospital is a big one. Mom’s sisters and brother were alerted and en route. When I got there, I put on a mask offered from a stand at the entrance. Being the most well person in the room, I was the only one in a mask. I stood for a while until they took me into the ER, and waited next to a wall. Meanwhile, my sister had landed at her connection in Dallas and was updated. Talking to the ER nurse, she asked that I be separated, so they put me in a family room while I waited, but mom had a temp of 103, so I was not able to see her and am not able to stay with her now as she is being held in the hospital for a few days. She came in with uncontrollable shakes, was unresponsive to commands, had a BP of 201/103, and was throwing up over and over. Thankfully, a CT scan,
New York city out of Legos.
We may be seeing this in real life.
showed that there had been no stroke, and after some tylenol, her fever and BP came down, and she would at least say her name, and acknowledged her sister and called her brother by name. But, that’s about it. She has a “massive” UTI, small amount of pnemonia, and
His hair put him right at 48".
early signs of Sepsis. She is being treated with antibiotics and they are keeping her until the cultures grow. So, with my sister out of town, and me unable to assist in the hospital, we are both feeling pretty helpless and just sorry that we are helpless to what she is needing. Because of her dementia (and UTI’s make that even worse) she is confused and restless, all the cords and wires, beeps. Most of you know that it is not an easy job to sit with an elderly person in the hospital under any circumstance. My mom is blessed with siblings and siblings-in-law that love her, and she enjoys the privilege of being a decades-long faithful member of God’s family, so she has spiritual siblings that love her, too, so she is taken care of, but still, it’s been us three for a while now and it’s tough on both of our parts to be unable to be there. Just another stress knowing that’s going on, and not much I can do. So, that was yesterday, along with it was the irritation that yet another instance where I was dependent on friends to experience fun things with my own children. Abbey has her first honor’s club convention trip to Birmingham during which she will participate in a group musical competition (Abbey LOVES friend/group trips), and I had planned to go and enjoy the weekend with her and have a little friend time myself. Of course Eli’s situation had already made the trip a little iffy, but with mom in the hospital I definitely don’t want to go. So, while I sat in the little private waiting room, unable to do anything but answer questions, I had to have Vic pack her up and get her to a
Splash Mountain at Disney our fav, I think.
friends house to ride with them (for anyone on that trip, I do not know what she packed to wear or that she even has everything she needs, so I’m so sorry if you have to make up for me not able to get her ready). That leads to Tuesday in Memphis at St. Jude. We met with the radiation doctor, the head of the department, and we were disappointed to hear that the consequences of radiation a second time would be more devastating than we thought. We knew it wouldn’t be easy, but he just kept looking at Eli and saying “He just looks so good, I just think this should be after ever single thing has been tried. I would do every chemo that you could before doing this again. He just looks so good.” So, that kind of shot our plan A out of the water. Plan B is not plan A for a reason, so we had a pretty good discussion with our Onc
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about options. We know that St. Jude is using an old drug a new way, but he was blunt that they had not seen the success in relapse that they had seen in new diagnosis. I already knew that, which is why it is our plan G. So, another drug has just been released (it doesn’t even have a name yet, just code numbers) for use by members of the Pediatric Brain Tumor Consortium, of which St. Jude is one. The drug is released only for use as a single agent (he can’t add other chemos with it). And, as a single agent it MIGHT…. MIGHT…. stabilize it. Well, if it’s NOT stabilizing it, it’s growing. The medicine is mild as far as side effects, and is taken orally, which for me, I just don’t see anything orally doing anything. That little pill has to go too far in the body to get to the brain for enough to be left that is potent enough to fight this. Which is kind of what they are wanting to find out, one of the reasons they can only use it by itself - this is a phase one experiment, really. And, if we start it, that kicks him out of our plan B and C because he can not be on any treatment to start these and would have to wait over a month to get it out of his system before being accepted into our Plan B and C. (As you might remember our Plan A was radiation and the Louisville immunotherapy when it opens. The radiation we wanted to bridge us until Louisville opened. We can’t wait on that now, so Louisville is no longer part of our plan. However, Plan B and C do not kick him out of Louisville when it does open) So, what is our Plan B and C - really I should call it Plan B and B2. So plan B is at Sloan-Kettering in Manhattan, and Plan B2 is at MD Anderson in Houston. We are pursuing these simultaneously for now, and I’ll explain why in a minute. Both will require the Ommaya shunt, which
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 is brain surgery, which is scary considering, well that it’s brain surgery, and because his platelets and hemoglobin are borderline. But, in reality, compared to everything that is a footnote. Sloan-Kettering has a phase II trial, so it has been around a while, however, St. Jude said that SK has not published any results. So, the only sign that it might be working for some (I say “for some” because I have already been personally in touch with two that it did not work for)is that it has not been shut down. Our onc said that trials get shut down pretty quick if the results coming in are obviously not good. So, the kicker, and the reason that we are pursuing it simultaneously with MD Anderson (as you might remember from my last explanation) is that the treatment med looks for a specific marker in the cancer cells (GD2) and if Eli’s cancer does not have this marker, there is no reason to do it. So, I’m not sure how it will work to find out if he has a GD2 expression (can they determine from his original tumor collected, do they biopsy what is there now, etc.), but we don’t have time to waste. Just in case it does not have this marker, we want the process with MD
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Anderson already done. Just getting paperwork transferred between hospitals (just the paperwork) is a weeks process. We gave a slight edge to SK because the treatment is phase two, and because both our Onc and the radiation doctor (who mentioned it without us saying we were considering it) seemed to think it was an interesting approach and “should work.” Eli would orally take radioactive iodine - which is like the radiation that we thought were doing, but it does not do the damage that the light would do. So, the MDA thing is the NOAH protocol and it literally opened up on Tuesday as I sat in the doctor’s office at St. Jude. So, it is an infant phase one. Many in the medulloblastoma parent community have been watching and waiting for this to open. It involves harvesting Eli’s natural killer cells, cooking them a bit, and then giving it back to him like a vaccine. The difference (one big one, I’m sure there are many) from it and the Louisville (ok, the first big one is that NOAH is open and Louisville is not) is that the NOAH gives it to him via the Ommaya directly to his brain using spinal fluid as the carrier, and Louisville was using blood as the carrier hoping it would get to his brain. So, we are looking for something out of the box, something novel, and this certainly is and has a lot of interest in it. And, I’ve mentioned before that it just seems like there has been little signs all along the way that have been leading us to MDA, so I almost feel like this pursuit of Sloan-Kettering is a futile exercise. And, I don’t want to fly into New York, and don’t want to live in New York even for five weeks a time. That doesn’t mean I won’t do it if that turns out to be the best choice, but, man, I dread dealing with that. It’s a 16-hour drive, and I would not like taking a cancer kid on public transportation. So, even though Houston is a big city, it seems like it would have more accessible suburbs, and an environment to which I am more accustom. So, that is our Plan B and B2. We are just now in the pursuit stages - phone calls, follow-up phone calls, send this, send that. I do not know their timetables, but my hope would be for us to go to both Houston and New York next week. I don't know if that is realistic or not. Meanwhile, guess what is growing.

Eli is feeling really good, his bloodwork is improving. Still showing signs of kidney stress, but improving as well as is his blood pressure. I’ve got another couple of car loads to move out of mom’s place, then we will need to get our house listed again. All in time for the seasonal change, which makes a mess getting clothes out and put away. Caleb had his first baseball practice, for which I was absent and had to rely on a friend to get him there because we were in Memphis. Yet another first that a friend got to spend with my kid. This is getting long, but also want you to know that our non-profit is still growing our first event, Eli’s car show. It is going to be a great day, we are excited about it. April 18. We are ready to announce a few fun things in conjunction with it. We are taking t-shirt orders for the show which features custom artwork by Shawn Doughty, and it’s of Eli, so you are going to want one! We also have something really fun to offer. We are preselling “Eli Bear and his puppy pal Victory!” You can purchase a stuffed bear with a blue shirt with a picture of his Eliminator monster truck, and/or a cute puppy with a yellow shirt and our Team Victory logo. Lastly, you can purchase a color poster of Shawn Doughty’s event artwork. Proceeds for all of this goes to Team Victory 4 All

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