Sunday, December 29, 2013

We are here! First day.
Walt Disney is quoted as saying that he never gave up on the core of his dream to create a place for parents and children to have fun together. He grew up in an encouraging family environment with four siblings. So, glad he was determined in his dream because I like us together, too (mostly :) . And, I’m not sure who was more excited to see Buzz Lightyear during our whirlwind Disney vacation, me or the kids… well, me, actually. The kids rarely wanted their picture with any cartoon celebrity, but I was not deterred by their party-pooper shyness. I had them stand in any line leading to a carpet-clad, vinyl-headed character. The Disney experience is an experience. Every day from breakfast until bed was a bipity-bopity sensory overload. We were only good for about six to seven hours each day, and Hg was sick with a head cold the first couple of days, then I fought it and fended off a migraine two days (I discovered Advil Migraine, and it actually helped some). We also visited Universal Studios twice. Universal seems to attract older kids and it just wasn’t as fun because of that. It felt very crowded and close, the patrons were not as “happy,” and the lines were horribly long mostly. But, we loved the themes of the attractions. Vic and the girls are big Harry Potter fans, so they toughed it out shoulder to shoulder in the Hogwarts area for a couple of fun
The castle lit up for Christmas.
 rides that they waited over an hour for, and where the girls bought personal wands and declared their “house” (Abbey - Griffindor, Hg - Slytherin, which is no surprise.) They all three also braved the Hulk roller coaster a few times. Our second day there was on the Monday before Christmas Eve and it was impossibly crowded. Eli had seen signs for the Transformers ride several times during our drive to Orlando and he (and all of us, actually) is a huge Transformers Prime fan (not the real movies, we have not let him see those). We waited over two hours in line to ride it, which was pretty much all we rode that day. It was really fun, but not worth the time for the line with four kids - two of whom are Abbey and Caleb. I should have worn a recording device around my neck all week that said “Abbey, Caleb, stop. Abbey, Caleb, stop.” The other recording would say “Vic stop provoking them. Vic stop provoking them.” The third recording would say, “Where’s Abbey? Where’s Abbey?” In fact, if I just said “Abbey” over and over in the recording, I would hit 80% of what I needed to divert. I was worn out at the end of the day just from watching and containing the kids, and maintaining defensive mode. We all did decide that we liked the Magic Kingdom the best, although each park had something we liked. Hollywood Studios would
Toy Story - one of my fav series and LOVE the soldiers.
be second place. Caleb was just tall enough to ride any ride with us that we wanted to ride, except when we were at Universal he couldn’t ride the Hulk, which was fine with me as my Migraine was creeping in that day. Eli was only restricted in going upside down, and because he was still wearing surgical dressing from having his port placed he could not get wet. So, the boys and I split off a
Caleb and Jake the Neverland Pirate.
couple of evenings to do what they wanted to do, but mostly we were able to stay together - which was always a goal when we use to talk about going to Disney, to go once all the kids were big enough to enjoy everything. So, that was nice that anybody could do just about anything that we wanted to, and they were all big enough to make it through an entire day without crashing on daddy’s shoulder. But, I know that you are reading to hear about Eli.

One of his favorites was the stunt driver show at Hollywood.
Eli was simply fantastic. Remember that he had surgery on the 12th in Memphis to insert a port to receive chemo, and we drove home from Memphis right after that arriving late, then left to drive to Orlando on the 14th, which took us until the 15th to arrive. We went directly to Downtown Disney on the 15th to begin our 9-day high-octane vacation stimulation. Those days of Memphis to Orlando were tiring for me and I hadn’t done what he had done, don’t have what he has, and ain’t doing what he’s doing - which is trying to fight his cancer nutritionally before beginning chemo for the second time.

If you are just joining this journey with us, Eli’s metastatic relapse of what we believe to be a return of an aggressive brain cancer called medulloblastoma has no known durable treatment (certainly no cure). His general statistical prognosis is that 9% of relapse patients survive two years with treatment. There are a handful of success stories, children who are surviving treatment, but researchers have recently been able to subtype the disease and it would be hard to hold up one success story as an example of hope. Eli’s subtype is the most common, but one with which they have the least success. When I say “success,” understand that success is
We loved our suite at the Cozy Cone in Radiator Springs.

 measured in months. Untreated, we would lose Eli by summer’s end. So, what is on the table for us? Radiation, known to kill active cancer cells is out because he has already endured high-doses of it. If he survived due to more radiation, the treatment would eventually leave him so mentally deficient that he would be unable to function. He has already endured high doses of certain chemo drugs. The cancer cells survived that poison, so to give him the same drugs would be to repeat something that didn’t work. What’s left on the table? St. Jude, of which Eli is a patient, is a world leader in research and treatment for pediatric cancer. Hospitals around the world look to it for guidance. It is consistently in the top 3 of children’s hospitals in the country year after year. If there was a successful treatment, it would be “standard of care” and St. Jude would be using it. There is no “standard of care” for relapse medullo. Hospitals around the world are using what their own doctors believe to be a reasonable attempt to treat the
CARS- Loved the first movie.
 disease while research is developing. We are team St. Jude, and will always be, but its researchers can only offer an option that has shown some success in lab rats. There are two drugs that they have used with zero success in children for medulloblastoma relapse (they are used with success in adults for other cancers such as colon and breast) but it has shown some success in lab rats when they have changed the infusion rate at which the drugs are given (the body’s natural instinct is to discard harmful chemicals from it, so it works very hard to get rid of the poison as soon as it can. Researchers are hoping to slow down the infusion rate so that the chemicals stay in the body longer, exposing the active cancer cells to the drug longer.) This is the proposal for Eli. The experimental part is the changing of the infusion rate, not the drugs used nor the dosage or toxicity.
With the little guy who started it all.
 But, they have no measurable success for this as, I think our doctor said, only 7 kids are on it. As I have said before, with this protocol we would all move to Memphis for the duration of the treatment because neither Vic nor I would would want to miss even an hour with Eli during the last months of his life. Along with that experiment on the table sits a protocol that has been used for a few years by members of the Children’s Oncology Group - a group of leading hospitals that collaborate and share research of which St. Jude is a member. It has shown less than modest success while the kids are on it, and St. Jude does not use it as standard care for relapse because it also has no durability. At best it adds the most months compared to anything else out there. It is low doses of three chemo drugs that Eli has not taken, so we are hoping (hoping) that the cells respond. It is not a trial, it is not research, it is a general treatment plan that promises nothing, but offers measurable success in that it might give us more months than another treatment - it is at least something to do that might do something. St. Jude has used it before, as I mentioned as a member of COG, and will administer it. The treatment is low dose, he will be able to receive the treatment at our Huntsville St. Jude satellite clinic and will do some oral treatment at home. This will allow us to all live here during
Eli making his own Darth Maul lightsaber.
 his treatment, the kids continue their normal lives as we travel this difficult road through the last unknown number of months with Eli. We have sent Eli’s health records to be reviewed by Boston’s children’s hospital, a top children’s neuro-oncology hospital, but the clashing of time and holidays has made it impossible to get a second opinion in a timely manner. The aggressive nature of the disease has given us but a peep-hole of room to act. So, through our own research of options and experience with St Jude, we believe those two treatment plans to be the only viable traditional treatments for him. We are opting to go with the COG protocol first, to see if the disease responds. If it doesn’t, then in a desperate attempt to do something, we will allow St. Jude to experiment with the infusion rates of the other drugs.

There are many “kickers” in this, so I will use that term often, but a kicker here is that there is no way to know that it is the same cancer without a biopsy. Because cancer treatment can also cause cancer (exposure to radiation causes cancer, for example), this is no way to know exactly what this is just by looking at images. At the last MRI, he showed multiple lesions, which the doctor believes there to be more. Relapse traditionally occurs at that original tumor site.
One of the photogs got them to do that... not I.
 There is nothing there. His spinal fluid at the last tap was clear, but even if it were diseased the sample would be too small to determine what it is. The only way to know what kind of cancer this is, is to do a biopsy. A biopsy would mean brain surgery and with it the dangers and deficiencies of such. Plus, the lesions are small and can shift, so the surgeon would be hard-pressed to know if he or she is even getting the diseased tissue. So, to choose drugs being used to treat brain tumors in general is the best that can be done, hoping that whatever kind of cancer this is responds. So, that is what traditional medicine has to put on the table. Less than appetizing, nauseating even.

With a success rate of 9% to gain a few months, Vic and I opened our minds up to consider alternative treatments to supplement - or in extreme hope replace - traditional medicine. With traditional medicine basically only offering extended palliative care, it seems that alternative treatments with it’s immeasurable promises and personal testimonies is a viable “what if.” Though Vic and I are on the opposite ends of personality, we are both skeptical people. Me -skeptical because I know that my intelligence makes me an easy target for persuasion, so I put up defensives for everything hoping that in the end the genuine will shake out. Vic - skeptical
Big Harry Potter fans. This is entering Hogwartz at Universal.
 because he is of the scientific type and his intelligence gives him the ability to understand the paths and answers to which his questions lead, so why not question everything. So, we approached this side of treatment with much caution and … skepticism. And, do not be deceived. It is no less complicated than the traditional side and still requires the trust of others. The industry, as it has become, entangles truth with lies making it difficult to navigate a path. Mongers easily hide within the loosely regulated practice preying on the desperate and dejected with promises, second-hand testimony and questionable business practices. However, despite the field being fraught with fraud, we believe in the basis of holistic healing. We believe that God created a remarkable shell for our souls and placed it in an environment with everything it needs. But, we need guidance because of the information overload and learning curve. Plus, time is a demon we fight.
Me and the boys doing our thing.
 When we returned from Eli’s first treatment, we immediately started him on a juicing regimen under the care of a holistic doctor. He is a western trained pharmacist who keeps his certification current. His connection to traditional medicine helps us trust his intentions and knowledge a little more. We were not diligent in following the protocol we were given, and never restricted Eli nutritionally any more than the other kids, but just had him drink lots of the fresh vegetable juice and kept up with the addition of a couple of oils. When Eli and I returned home from receiving the devastating news this time, Vic and I did not want any questions left hanging on the other side. We wanted to know that we did all that we could to heal Eli. So, we met with the doctor again who changed the protocol to a more aggressive regimen of strictly raw foods, added supplements and oils, and some other things. Still we are dealing with a 9-year-old boy who has never eaten a piece of fresh whole food in his life. It would be wonderful if I could say, “ok, Eli. You are going to have to eat a banana” and him say “ok” and reach for one. That is not how it works. He cries at the thought of eating a piece of fruit, much less a carrot. I needed help to find something he will eat that is what he needs to eat. I reached out to the friend who led us to the doctor. She is a nutritionist trained in the traditional medical field with experience working with kids fighting disease. Now, fully committed to holistic
The Map, the map, the map, it's the MAP!
 healing, her knowledge and experience is invaluable. I sent her a blunt plea for help. So, she jumped on board to support this effort. She prepares raw dishes for Eli to try that include what the doctor wants him to have. She prepares juices and smoothies that include what he needs. She is able to keep up with calories to make sure that he does not lose weight and maintains energy. He will drink the juice and smoothies great, but we are struggling to find food that he will eat. We began this new journey on December 10th and Eli has only had raw food to eat since then. He has lost one pound. Again, time is one of our demons. The doctor said that it would probably take about 3 months to see any affect. We don’t have three months because if it is not working, the disease would almost be out of control by then. So, our plan is to continue this aggressive proaction until he has his next MRI on January 2. Our secret prayer and extreme hope is that the MRI on
In front of "Mt Everest".
January 2 show that this approach at least stopped the growth, show some sign that it is working. This would be enough for Vic and I to decide to put off chemo for another couple of weeks or at least until St. Jude agreed to do another MRI to check again. Once we start chemo, Ei’s appetite for even junk food will decrease, much less for a green protein smoothie. So though we want to continue this regimen while on chemo, it is not likely to work simply because Eli is a child and can not comprehend the magnitude of the need. But, that is our next hope and prayer, if the MRI shows that the lesions have continued to grow over this last month, then we start the COG protocol on January 3 with the intention of keeping him as healthy as possible to fight what he needs to fight. If the chemo is able to knock the cancer down, then we are hoping the holistic treatment can hold it there. Many of you have sent me links and information about holistic treatments and products. I do look at all of it and it is interesting for my own information of what is out there. But, I do not feel comfortable or knowledgeable enough to adapt anything that the doctor and the nutritionist are doing because I don’t understand it all. This is where the trust of others comes in. Just as we have to trust our doctors at St. Jude, we have had to put our trust in this doctor, which is why his credentials were so important to us. But, I do enjoy reading the information that you send. We do
Eli talking to Betty Boop at Universal.
 still struggle with the notion that it is all snake oil and hippie talk, and we know that some will judge us as gullible. But, standing at the mouth of the valley holding your child’s hand, who would not grab at any rope thrown down. The best we can do is tug at each so that no rope is left hanging.

So, I got the news of the recurrence on the 6th. The boys and I race an ice storm home so that we don’t get stuck in Memphis. We have our meeting on the 10th with the holistic doctor and nutritionist and begin our effort. We go back to St. Jude on the 11th to view the MRI and Eli has surgery on the 12th to have a port placed in his chest to be ready to receive chemo, and we travel home from Memphis that night. We leave for Disney on the 14th. A normal Disney vacation is stressful enough, but we were still processing the news and feeling the weight of the trip knowing that our time with Eli is short. Plus, Eli was recovering from surgery, and we were trying to find our holistic protocol legs. We wanted a positive experience for all the kids, but we were trying to get him to eat what he needs to eat, so sticking to the supplement regimen made it even more complicated.
I, at least, loved getting autographs.
 But, we concentrated on each day only, even breaking the day up. We had an army at home working for us. Family and friends cleaned the house, which was again in a mess - dejavu. I was ordering Christmas online late at night at Disney and shipping it home for elves to wrap and they had it ready for me when we got home late Christmas Eve. My sister and Melissa worked with the nutritionist to package food in coolers and overnight it to Disney for Eli. This was a real pain for them all, and expensive but we do not have any wiggle room… not even for a mouse. I will repeat what I said in the beginning: Eli was fantastic. After the first couple of days, where he seemed a little sluggish, he perked up and had as much energy as all the kids. We had no special treatment, no wheelchair, no line cuts outside of the normal express pass that we paid for. We went from late morning until late night. He has gotten use to eating his own
Mrs. Lori made some special raw cakes for Christmas for us all.
 food while the other kids eat whatever, mostly because we reward him with toys. Sorry, but I have no shame in that. It is tough for a little boy to eat raw coconut cashew date squares while his sister is stuffing her face with pizza. And, he did it without complaint, not always eagerly, and not always with a happy face, but never asked to have anything else. He is doing his part.

During the vacation, Eli says that his favorite things were dressing up like a pirate; designing a car to drive at Epcot’s Test Track; riding Mt Everest roller coaster at Animal Kingdom; riding Thunder Mountain roller coaster; getting his picture made with Transformers BumbleBee and Megatron (at universal); buying transformers and buying Legos at Downtown Disney. We had an “I Spy Eli” sighting while at Disney. She was kind to send all the kids gift cards to shop. There is what is basically a “Build-a-Bear” but with toy cars at Downtown Disney, but Eli could not get his mind
Just Dance to the Ghostbusters.
 off Legos despite already having bought some. So, he bought more and Caleb built a dump truck. It was a very cool idea for the boys. He does love shopping for souvenirs. He was always willing to stand in line for what we wanted to ride, but he loves to buy stuff. The more legos and the more transformers the better, even if it means he has two of the same. The Art of Animation resort was a theme park itself. I adored the Cars movie theme and it was like we stepped right into downtown Radiator Springs. We had lots of compliments on our matching shirts that we wore at least half of the time. I love t-shirts, and love the “team” spirit when we all match. We had compliments on all the shirts, but we had the most comments on the Incredibles shirts. We even had a sweet little Mexican lady ask to have her picture taken with us. The kids were mortified all day wearing the shirts because of the attention. They were fun to wear, and it was really fun to have them on when Mr. Incredible was at Epcot, mostly because the kids were so embarrassed - even Vic was a little. But, with all six of us in the shirts, we were a sizable sight. We never got the same looks and
It was a Lego kind of Christmas.
 comments when we were separated, like when it was just me and the boys going somewhere. But, put us all together in them and we were noticeable. It was an amazing week and in 100 lifetimes I would never be able to repay any of you. You gave us more than money can buy.

So, the trip was emotional at times, difficult to keep my mind clear of unthinkable thoughts. It took a conscience effort, as it does every day, to stay within the current moment. Christmas was also tough knowing that it could be his last. I wanted it to be perfect and every time he mentioned something that he wanted Santa to bring, I wanted to pull it up online and order it. It is tough to hear him talk excitedly about being Darth Maul for Halloween, or that he wants a Mustang when he turns 16 or about something at school. A friend from Florida visited while we were there and she asked how I was coping. Well, right now, I have a pretty simple tactic. I just ignore it. I ignore reality because Eli makes it easy to do so. He looks great, and acts great. He has a lot of energy, smiles a lot, laughs a lot, and even skips and runs around the house. So, it is easy to tell myself that the doctors were wrong, or that our holistic healing is working because he does not look or act like a kid being attacked by brain cancer. A time is coming when reality will slap me in the face. But why face something that is not in front of me yet, so for right now, I just try to enjoy his energy and soak him up with all my senses.

Eli and I plan to leave on Jan. 1 for Memphis. We think that we will be gone about 10 days or so for this first round. Until then, we had family portraits made before his hair falls out again; I hope to take down Christmas; and I hope to see friends before we go. That’s all we have planned … oh, and put the laundry away. We had so many sweet offers and follow-ups about Eli’s “bucket list.” I hate that I called it that and it caught on so publicly, so let’s call it a Wish Bucket, something in which to carry his wishes. The Disney trip was a huge checkmark. I had also mentioned that we wanted to take him to the Ford Mustang factory and to the College Football National Championship to see Auburn play. We’ve had offers to make both of those things happen, but we will not be able to go to the championship game because we are expecting him to be receiving chemo at that time at St. Jude. We have had someone that will be on the sidelines offer to FaceTime with Eli during the warm-ups, so that will be fun… I hope. If you know Eli, you know that he is kind of shy and not very excitable. So, going just won’t work out because if the MRI shows progression, we will need to start chemo on the 3rd. So, that leaves a visit to the Ford Mustang factory. We were hoping to go this week, but the factory is closed for the holidays. So, I’m hoping after we get this first round of chemo behind us and know how it will affect him, we can make plans to go up there. The corvette plant and museum is just a few hours away, too, so I hope we can take him up there after it opens back up.

I have been seeing so many posts about sicknesses, so we did not go to church because we need Eli to be well to begin chemo. Thank you for following Eli and continuing to pray for him and spreading the word for prayers. I will do better about “blogging.” I am a long-winded writer, so a blog - which is suppose to be short - is tough for me, but I will try to “not write an article” as Vic says, each time. I am going to try to make a slideshow of our trip to share more pictures.

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