|We are here! First day.|
|The castle lit up for Christmas.|
|Toy Story - one of my fav series and LOVE the soldiers.|
|Caleb and Jake the Neverland Pirate.|
|One of his favorites was the stunt driver show at Hollywood.|
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.|
|With the little guy who started it all.|
|Eli making his own Darth Maul lightsaber.|
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.|
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.|
|Me and the boys doing our thing.|
|The Map, the map, the map, it's the MAP!|
|In front of "Mt Everest".|
|Eli talking to Betty Boop at Universal.|
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.|
|Mrs. Lori made some special raw cakes for Christmas for us all.|
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.|
|It was a Lego kind of Christmas.|
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.