Thursday, May 21, 2015

I don’t really have much of an update yet as we have just kind of been trying to do some reading, and trying to get our thoughts together, and have been in contact back and forth with doctors. All the while catching up on housework, running errands that had been put off, enjoying the kids, and preparing for their last week of school. Caleb, our youngest, graduated kindergarten, and we are wrapping up the homeschool year for Hg and Eli. Tonight is high school graduation at our school, and Eli is going to offer a little short talk, so we have been preparing for that as well. And, with the house for sale, it has shown a few times since I have been home, so we’ve had to drop everything a couple of times to scurry about tucking and hiding things for it to be shown. Eli still seems to feel pretty good. He seems a little low energy,
 which can be a sign of disease progression, but I wouldn’t expect we would see fatigue due to that reason for at least another month or so, but it is hard to know. He is not exactly the type to be bouncing off the walls anyway.

We have been in contact with Sloan-Kettering to get the ball rolling with it again, and the personnel have been much more responsive (we have no idea why the sudden change). To review, this is the trial that would require that his cancer cells include a certain marker to attract radioactive iodine designed to attack that marker. We are hoping that his pathology slides arrive in New York tomorrow to begin testing for that marker. This is a phase II trial. It would however, likely affect his chemistries (knock his immune system down,
Abbey and her teacher. Abbey's
class chosen awards.
suppress his tired bone marrow), so we are not sure how much of that he can take any more. We would just have to meet with the doctors to talk about it all. But, it is attractive as a phase II trial because they know it is safe, but that’s all they know.

Another phase II trial in Michigan with Dr. Giselle Sholler is available out of South Carolina. We talked with a doctor at MUSC, and she believes that Eli would qualify, but the Nifurtimox protocol includes two chemotherapy drugs. So, the myelosuppression, again, is an issue with him after having already gone through so much chemo, and one of them is pretty harsh even on a fresh kid. So, it is an option, but not very attractive.

I contacted the sponsor of a trial at University of Florida that seems to me to really make sense, and I would have loved for us to have been a part of it - another immunotherapy trial. But, it is a phase I trial and the rules are pretty strict (it’s research, so they need to compare apples to apples). More than one reoccurrence is an exclusion, and they consider Eli to have had a second reoccurrence, so that makes him ineligible. (They are counting reoccurrence number one in December 2013, and they are counting the growth of disease in February as reoccurrence number two).

MD Anderson contacted us this week with a trial that was opened yesterday utilizing the Omaya, but it is just injecting methotrexate into it. We just don’t see that more myelosuppressant chemo is the
 answer, and the side effects were scary, plus St. Jude is not a fan of methotrexate for medullo, so we are confused as to why MDA thinks it is. We are getting conflicting info. Nevertheless, we do not think it is a first choice, even though they contacted us and were genuinely interested in having us back to try to help us in some way.

In my internet perusing over the weekend, I noticed a trial that I had not seen previously, so I immediately sent Eli’s information to the sponsoring hospital, Mayo Clinic, in Minnesota. To this simpleton, the trial seems just that, simple… too, simple. However, it being at one of the most respected cancer research centers in the world gives it quite a bit of weight, so I guess this little Alabama mama would have to trust that the fancy researchers there have done their homework. It is another immunotherapy treatment, which is what we were hoping for. My summary is that they will inject him with a cold virus and his own immune system will attack. Obviously, there is some lab processing of something, and some injecting of something harvested from something, but I don’t know those details… yet. After talking with the doctor, the trial seems to have pretty broad inclusion criteria, but what makes me a little nervous is that it is targeting more than medulloblastoma and it is not specifically for leptomeningeal presentation. So, it kind of feels like throwing a dart, and it is a phase I so I guess that’s why it feels like that. But, again, looks who’s throwing the dart. It’s not exactly the water-boy… it’s not even second-string of a championship team. The reality is that this is just where we are sitting along the timeline of the history of childhood cancer. And, when I talked to the doctor, it is a pretty familiar song, second verse. I sent an email with Eli’s information, and I heard back almost immediately. That was the first clue that roused my suspicion of how she would answer my question. In talking with the doctor, I said, “I’ve been looking at trials for a while now, years, really. I don’t remember ever seeing this, is this new or have I just missed it. How many kids are already going through it?”  With an Indian accent she said, “Oh, this is very new. It only opened last week. Your son would be patient number one. You are very much on top of things.” Hmmmm… Yes, indeed. My kid’s toenails were so long that they had turned under growing back into his toe, but, yes, I am very on top of things. You can imagine the depth of my sigh when she said that Eli would be patient number one of potential medical history at a world-class cancer facility. So, we left it that, based on his paperwork, she would like to see him if we are interested to further investigate his eligibility. I overnighted scans yesterday, so I hope to hear from that doc tomorrow, but it may not be until Monday.

So, I guess, as of right now… and we all know that I literally mean as of right now because things change and my understanding of things change… the only real options are: Plan “B” -  Sloan-Kettering, until we are ruled out due to the lab finding, or if they tell us that the expected myelosuppression is potentially too severe; and Plan “F” -  Mayo, unless or until something “anomalous” knocks the Boy Pioneer out of his saddle again.

At the end of the line, or even as a kind of home-grown hospice protocol if SK and Mayo fall through, I would still like to consider cannabis oil, however, Vic is not on board. I have researched our legal ability to get it, possess it, and administer it, if he comes around. There are a couple of non-profit organizations that guide you along that journey, so I personally would like to pursue it. But I would need his approval, and his complete committal to it because I would need his help and his brain. I have started Eli back on some supplements since he is not on chemo, but at the most it might make him feel better, I would be surprised if there was any tumor control.

I appreciate all the input and links sent to me. Unless it is something I already know or have seen, I look at each. Sometimes I read thoroughly, sometimes skim, just depends on my time, or what I might already know or believe. Sometimes, I get a doctor name, or a facility name, or company name, or some sort of fact that leads me to my own googling. So, with that in mind, I thought, with this lull in our activity right now, I might try to share a little bit about how I “research,” or the websites that I like to use to get information, or just how I go about finding things that seem useful for us.

First, if it has not been just glaringly obvious, I have no medical background. Never even had an interest in things medical except that when I was in college I almost majored in exercise science because I liked fitness, most specifically sports. So, I had to take a first-aid class in college. That is as close to anything medical as I had ever dealt with until my dad died in 1998 due to a botched routine surgery. I’m not sure that I had even really been to a hospital before that, except maybe for a press conference when Huntsville Hospital bought Humana in 1994. Even when Daddy went in, after things took a wrong turn, we just trusted the professionals in front of us. So, not only am I out of my comfort zone, I am not even in the same hemisphere as my comfort zone. And, I am not a good on-the-spot questioner, which is one of the things that kept me from being a good reporter … one of the things. I can think of all kinds of things later, and all kinds of cleverly sarcastic remarks later, but at the time, all I can do is nod my head and take notes, not even good notes. But, I do feel like I’m pretty good at thinking of and seeking out resources, which may in turn lead to more resources, but eventually to information that is helpful. And, I’ve gotten pretty good at just asking, and pretty good at knowing when “no” is an answer and when “no” is a change in direction.

So, due to Eli’s past treatments, having had numerous chemotherapy drugs, and full brain and spine radiation, I already know that for him to be treated, he will have to be treated as part of a trial - a government-approved experiment conducted by a hospital. Any kind of off-trial treatment (which is what he had been on. Our doctor at St. Jude customized the regimen for him using drugs that are already approved and have been in use for a while), is in part or in whole what he has already had in some combination. Knowing that our only hope is a trial at this point, my first stop is The site has listed all trials either on stand-by, open, active but closed, closed, or withdrawn. I search “medulloblastoma” on the site, and over 100 trials come up. Since my search word is broad (using just the disease word), and because I choose to look at all trials whether they are open or closed (I’ll share why in a minute), I get the gamut, including newly diagnosed trials, solid tumor trials, recurrent trials, peripheral treatment trials (like yoga for brain cancer patients, or the use of a one drug to relieve neuropathy during treatment), anything that has anything to do with medulloblastoma. I don't want to miss something that might fit us just because I used the world relapse instead of recurrent, so I keep my search criteria broad on that site, then sift through. I look for the words recurrent, relapse and leptomeningeal in the descriptions of any trials no matter the status. If something is curious or seems to fit based on the title (whether it is open or not), I check for the drugs that are used. If Eli hasn’t had any of it, I read the exclusion criteria in the text and description. If, from my understanding, he seems to fit, I look at the sponsor hospitals listed. I email the primary sponsor(s), or if multiple hospitals are listed, I check the U.S. News and World Report “Top Pediatric Cancer hospitals” list and see if any on the trial list are on the “Top” list, then choose based on that. If I see a trial that is closed, but looks interesting and I think that Eli seems to fit, then I still email the sponsor. If contact information has been removed, then I google the trial name, and I usually find something that gives me the hospital name and sometimes the original doctor’s name. So, I just google that name, and if I still can’t find contact information, I utilize one of the best resources out there - the medulloblastoma parents’ Facebook page. It is a closed group, almost 900 people from all over the U.S., and from several other countries. If I want to know about a doctor, if I’m looking for a contact at a hospital, or if I need feedback on a drug or treatment, or feedback about holistic efforts or supplements being used, I just post on that site, then sit back and watch the feedback roll in. I watch most all comments posted on that page in order to pull off doctor names and drug names or treatment buzz words to look up and understand just in case I see or hear it later. There are several incredibly knowledgeable individuals on that site specific to Eli’s cancer because they are fighting the same thing, so I put a lot of confidence in them. I see it as a kind of equalizer, as independent information because nobody is selling anything, and if something is suggested it is because they have personally used it. I usually get enough info to get me over whatever wall I hit there, then continue on until I have the contact or information that I need. I find a lot of articles when I’m just googling, so I am careful to only read reports from mainstream media outlets, or from established trade websites and even then, I take the names or hospital names that I read in those article and see where else I might can pull them up. I also watch news from the Pediatric Brain Tumor Foundation, but would not ever use American Cancer Society because it gives so little funding to childhood cancer, so it makes it hard for me to pay attention to any information they offer about childhood cancer because it feels like they are just humoring me with general facts that are grossly underestimated and understated. I do like to pay attention to the Children’s Oncology Group. That is a non-profit organization that is kind of a research club that includes several research hospitals sharing information and trials. I watch dates really closely on anything I read, since the latest is the only thing very helpful.

For the homeopathic or naturalistic treatment, I prefer to stick to something that grows out of the ground or, if it is a product, I can buy it on the open market with choices to compare. I mostly avoid any product that is sold using multi-level marketing. And, I don’t mean to offend anybody, that is just kind of my line or where I take pause and is solely opinion and taste based. I don’t automatically dismiss whatever is being suggested, but that is a strike against it before I even get started. If the sales pitch seems plausible, and I truly can’t buy a substitute on the open market, then - if I have time, but honestly, if I have to take that much time, and have to dig that much, I usually give up pretty quickly and move on - I do try to find independent reports, I read articles that I can trace the origin of the website (many times it goes back to the people who are selling the product), that I can dissect before considering it. And, if I do find such reports, there is always information that is conveniently proprietary. Sometimes there is a professional organization or association that I might can email. For example, there are at least three Aromatherapy professional organizations that kind of keep a check on each other and provide great education resources. If I hit a wall there, I take advantage of a local friend who is very knowledgable, and if she doesn’t know it, she has resources that she trusts and gets back to me. That usually gets me over the wall, and I keep going if I think I need to. There have been numerous “stories" shared with me, fourth and fifth-hand stories about neighbors and friends from work, using these products successfully for something - never have I heard one for medulloblastoma because frankly, it would be like using a hammer to stop a train. Still I do pay attention to all of it, and I try to find legitimate non-profit groups that might guide me or that has an educational website. I have most recently been learning about what states have passed what laws for the medical marijuana, that has led me to some long-time established non-profit groups in Colorado.

So, that is kind of how I do things, and some things I research thoroughly, some things I give up on quickly for a variety of reasons. Most everything is over my head, but I always hope to glean buzz words that might be helpful later. It’s just an effort to gather as much information as we can through established organizations, both government and independent, and knowledgable people. Most of you are part of that effort, by sending me links, and contacts, so thank you for the time and effort you take to do that for us.

As of right now, Eli will offer a little six-minute talk to the high school graduates at ABS, and otherwise, we are enjoying our time at home, and waiting for something helpful to fall out of the sky.

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