Thursday, March 5, 2015

We have enjoyed growing a new interest - watching the Berry
College eagles and the new eaglets on its live webcam. A
campus photographer assigned to the eagles sent him some
of her work and a cute little stuffed eagle.
Eli has really enjoyed reading the “Who is” and “What is” series which are biographies and historical event books. Of course, his all time favorite is Henry Ford, that is a given. But, he also really likes Abraham Lincoln. Our 16th president is quoted as saying, “Give me six hours to chop down a tree, and I will spend the first four sharpening the axe.”

We have a plan. Just having a plan is a load off our shoulders, but the luxury of knowing if it is a good one or if it will work is not something we can enjoy. So, we will hang a poor man’s hat on just having a plan.

We have our first week off this week of visiting St. Jude (in either Memphis or Huntsville) in over a year. Eli’s bloodwork is decent enough that unless we think he is having a problem with something we won’t go in. And, he appears to be doing wonderful, you would never know to look at him that he is being fatally attacked. That is another layer of evil to this monster, the lies it tells. Being the
We have tried to do Yoga when we can at the house with a
friend of mine. Eli actually doesn't hate it, which is pretty big.
I am horrid at it, but I do like it. This is Eli in his Warrior pose.
farthest out from chemo as he has been in a year, he has so much energy right now, his color is beautiful, he is in a playful mood most of the time, and I even think his hair is thickening up.

We were suppose to go to Memphis next week, but the doctor we need to see we have learned will be out of town until the next, so our trip has been pushed back (which makes me nervous because guess what is growing that doesn’t take a vacation just because a doctor takes a vacation). So, I will do my best to explain what we are thinking, and we just got word from our doctor at St. Jude that he likes the idea. We have been reading about clinical trials, and asking questions of other parents, and reading about doctors, and reading about hospitals, and cells, and expressions, and markers, and gliomas, and glioblastomas, and things that probably didn’t mean a hill of beans in regards to what we are dealing with, but we had no idea so we (I) kept reading the words without understanding. We have been trying to peel the information back to something that we (I) could understand or at least peel down to something that leads to something that we (I) can understand.

And, before I try to explain our plan, I appreciate everyone’s input that have messaged me. I started reading about relapse three years ago. Sitting by myself, late at night, in a little two-bedroom suite at Target House with nothing to do but fret and read while Eli was in treatment in Memphis. I knew then what relapse would mean. If you are new to following Eli, we began a naturalistic maintenance with him after his first treatment was complete under the care of a naturalist that is a western-trained
It was so nice of our cover school to host this pancake breakfast
to benefit our new non-profit org. I think it was a great turnout,
but how wonderful the kids of the student council were. They
were precious young men and women.
pharmacist, but has a holistic practice now. We feel like we did well with that at that time, and then when he relapsed after 14 months, we had about four weeks before implementing a plan for relapse. Within that small window, we came at it full-throttle holistic healing and followed the doctor’s plan to the “T”. With the support of friends and family (including a registered dietician preparing raw food for Eli, and, for example, ladies literally overnighting food to us at Disney so that we could stick to the effort), we feel like we gave it a solid effort and did more than we actually thought we could do thanks to our support system. At the end of that four weeks, an MRI showed that the cancer was continuing to grow. So, we’ve been that route, and though I do believe that we need to keep Eli’s body as healthy as we can through nutrition and supplementing with what we can, targeting side affects, it’s just not enough to fight this aggressive monster and heal him. We have read about Burzynski (even tried to call there), we have read about Mexico, we’ve read about cannibis oil, frankincense, curcumin,
Eli growing tired of his paparazzi... Caleb said he knows why
I take so many pictures - for my "Rememory."
ASEA, Limu, JuicePlus, and just too, too many things to list. I think all of that (except Burzynski, and not convinced the guy in Mexico is the answer, but admittedly only scanned the info) and other things that have been presented to me have some health benefit, and even healing properties for some afflictions (and we have started back on ASEA when we can remember), but going on four years now, I have not had anyone tell me first-hand that their child had medulloblastoma and they shunned conventional treatment to opt for natural meds. There are many that are successfully on maintenance through specific supplementing after receiving traditional treatment, and my prayer is that we get back to that point one day. With our plan - which I will get to - I do hope to find some natural supplementing that we can do to help with the side affects and to heal from treatment. So, again, I love that all of you think about Eli when you read about something, or when you have had success with something yourself. So, thank you for sharing that information because from where I sit, there is nothing that I would not want to at least hear about, and I appreciate you all caring about Eli enough to want to help.

Again, if you are new, the treatment Eli has been on for the last year was at our request. It was not an option offered to us by St. Jude. Another parent wrote to me sharing what they had done (see, I do try to follow up on what you send!). We read about it, were able to find data on it, and St. Jude was open to using it. It was a chemo route, using drugs that are not new, in a combination that they had used in the past. They no longer used it because what they knew about it was that it was not curative. But,
Eli and me last week when we had
the first blast of winter weather.
 there is nothing known to be reliable and sustainable. In other words, yes, there are kids that survive relapse, but why does this one survive with this treatment and another does not survive on the same treatment. They just don’t know enough about the cancer, I think, so we were hoping to buy time while they learned more. And, we did, but our time is up, and there still isn’t anything out there.

Radiation is the only reliable agent to affect medulloblastoma. Eli has already endured the highest dose of radiation recommended for him. There are scary side affects, short and long-term. The short-term being nausea, lethargy, loss of appetite, and even stroke. The long-term side affects are just not that important because he would not live long enough to fight those anyway. So, knowing that medulloblastoma will shrink with radiation, and some older patients get a second round of radiation as part of relapse, we have decided to go another round with it in order to buy even more time. The short-term side affects are manageable (unless he has a stroke, but that is extreme), lending again to a good quality of life under treatment. Cognitive issues with it would be a long-term affect, and, again, by God’s mercy, if he were to live long enough to have cognitive issues, we would just deal with it. We can even do it in Huntsville, which also contributes to quality of life for us to be together in our own town. Eli is so good to not require sedation, so he would be able to have it a local facility under the care of our St. Jude affiliate (how many times can I say how blessed we are to have St. Jude here). It is not curative, so it is another band-aid. We don’t know how much time we might get out of this, but we had considered it and this is one thing that our St. Jude doctor offered (along with an old drug in a new way for which they have no real success with relapse, so we turned it down again). We are confident that it will knock it down, but not out, so we need a plan B, or we needed to pair it with something.

Because of prior treatments and his VP shunt, Eli is excluded from some things that might be options for others. When looking for treatments or something to guide us as to what’s out there, we look at clinical trials because there is no established treatment, everything is a trial. Although, children are treated “off trial”, which is how Eli was treated this past year. Our doctor took drugs he knew about and custom fit the treatment for Eli. Trials are in either the phase one, phase two or phase three stage. A phase three trial is when the treatment has had success and the bugs are worked out, it’s a “go”. Phase two is the stage at which they want to find the right dosage that is affective to treat the disease. Phase one is when they have something that they want to try and see what it does to the kid and to the disease. Phase three does not exist for relapse medullo, so we were hopeful for a phase two trial. But, the only phase two that we think he would qualify for that seems to be something “out of the box”, which we think is what we need, is chemo and radioactive iodine. It is in New York at Sloan-Kettering and it would only be if Eli’s cancer was tested (maybe biopsied) and shown to have a specific marker. It requires an Ommaya reservoir, which is a permanent “pocket and catheter” in the top of his skull to fill with medicine allowing it to drip slowly and directly onto the brain. This is used in several trials, and we are hoping to stay away from it. Obviously, we wish not to have yet another permanent hole in his skull, we wish not to have another major brain surgery, and we wish not to have an open window into his brain with easy access for infection. Plus, we really wanted a break from chemo, it just isn't working. None of that seems to offer a very high quality of life during treatment. So, that leaves us with phase one - for him to be a lab rat.

There is a lot of buzz about immunotherapy for medulloblasoma. It is a treatment that engages a body’s own immune system to activate a response against the disease. There are (I think, we’ve looked at so many things) three places with phase one trials for immunotherapy for relapse medullo. Two require the Ommaya reservoir. But, there is one treatment that uses the blood stream to get past the blood brain barrier (something the Ommaya also escapes because it is literally bore through it). A trial at Louisville, Kentucky, would harvest Eli’s “natural killer” cells, perform some kind of magic on them during a four to six week time period, then give them back to him as a vaccine that helps his own body fight the cancer. So, one problem is the four to six weeks while the vaccine is developed after the cells are harvested. If he has disease, it can get out of control in four weeks. So, we had the idea to couple it with the radiation effort through St. Jude. We know the radiation will control or affect the cancer for a little while at least. The second problem is that the immunotherapy trial is not open. Yep, not open, closed, not taking patients. We’ve talked with the doctor at Kosair Children’s Hospital that is hosting the trial and he does not know when it will open. They are just waiting for the FDA red tape to fall off. But, from looking at the background that we sent him, and understanding what we plan to do with radiation, he says that he believes Eli would be a candidate. They will take 10 kids in three years when it opens. So, looking for silver linings: We like that radiation will not affect his eligibility. We like that if, by God’s mercy, the radiation shows him to ever be clear that he is still eligible to begin harvesting and they will save the vaccine for when he begins to show disease again. So, we would be ready to go. We like that this doctor has an interest in the role of CMV, a common virus found in some medulloblastomas that we can’t get St. Jude to address. We like that when we presented this pairing to our St. Jude doctor he thought it was a decent option to try. We like that our St. Jude doctor said that Eli would continue to be a St. Jude patient for check-ups even as a Louisville patient. Phew! We were worried about that.

So, that’s where we are. We will be meeting with St. Jude on the 17th to talk about getting radiation started (which will likely be in Huntsville, yay!), and we have given our information to Louisville to contact us when the trial is open. This could be weeks, it could be months, even a year. If we go through radiation and the cancer grows again before it opens, then (as of right now, maybe something else will come along) we will go with testing for the radioactive iodine with the Ommaya.

I’m sorry that this was so long, and I hope it made sense. I don’t know anything that I am talking about - picking and choosing words that I have heard or read, not really knowing what it means or how it is used. We just pray for peace with God’s will, and comfort in knowing that, because we can’t know what He knows, He is taking care of Eli and us. As Eli’s said in his speech at the pancake breakfast, to quote Mordecai from Esther 4:14, maybe God has brought us here for “such a time as this” that we may help further something as a part of His will, which is to unite all things with Him in heaven.

Please, add another local little girl to your prayers. I don’t know her name yet. A six-year-old hispanic girl who lost her father to cancer in December. I think there are four or five kids total. Some family members speak English, so a member of a nearby church is working with the family to see what they need, and how they are accessing treatment.

Please, remember the car show coming up April 18 in Athens. Eli is very excited to see Mustangs again, but we are open to anything cool. The show is really shaping up nicely with something for everybody; cool cars, shopping, kids’ activities even Harry Potter and Queen Elsa will be there. We are still looking for sponsors, items for goodie bags (coupons, promotional things), and we are accepting craft vendors (would love handmade and unique crafts), and kids activities, and of course lots of cars! So, spread the word to car people that Eli and Leah (our Champion for the show) will be picking their favorite, so they need lots to choose from. It’s going to be a great day for the everybody to enjoy and benefit a wonderful and needy cause.

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