Monday, November 16, 2015

Here’s our little lab rat ready for his next assignment! And, it has been a maze kind of day, so stay with me on this for the kick at the end. So, Eli and I arrived in Memphis last night with a few things - very, very few things - in our overnight bag expecting to take an hour this morning to sign papers agreeing to oral etoposide to be taken at home, then hit the road home. I told the kids that I would pick them up at school today, and told Vic that I would do the grocery shopping for the week (for the sake of the sentence, let’s pretend I go once a week, but at least 50 of you see me there each day), and attack the mounds of dirty laundry when I got home today. Remember, that we only recently learned that we were on a waiting list to start a trial that we felt had promise. For a trial, a patient has to be a certain number of days without treatment to start, and for this it was 28 days - a long time in medulloblasoma years. So, we had avoided any treatment since the first of October expecting to start this week. Then we learned that the slots in the first cohort were full, and that Eli was third in line on a waiting list. I think our doctor was playing a little Russian roulette, and expected that enough kids would be disqualified for Eli to move up (that is pretty common, and how we ended up as patient number one on the NOAH, then were also dropped). Well, as of Friday afternoon, that had not happened, and Eli was penciled in for the next group which MIGHT start the last week of December, depending on how the first group did and how long it took to analyze the
 data. We were caught by surprise with this news, so Vic and I scrambled last week to find our footing for the next step. Over the weekend, we decided against continuing with the Houston treatment of methotrexate just because it did not seem to offer any benefit over the etoposide which we could do without going to Houston. So, we decided to go with the etoposide as the next band-aid to hopefully get us to the end of December for the trial, or until a doctor in Boston called us back that does not treat under trials.

That is why we were here today, to sign those papers to start oral etoposide. After talking with the doctor, we decided to go with intravenous etoposide, which is three infusions over three days for one cycle. A lot of boring reasons as to why we chose this over the oral, but the main point for the
 purpose of this writing is that our trip suddenly turned into three more days in Memphis. Knowing that Eli would probably not feel well the rest of the week - it is standard chemo, comes with the nausea, aches, etc. - we took the rest of the day to go to TRU for a Transformer and some DVD’s for him to watch in the evenings, and then to Target for me some shampoo, another t-shirt, and some underwear, so that I can at least wear something while I wash clothes. (For those of you that have been following for a while - do you remember when you donated 900 pounds of laundry detergent for the Grizzlies House, now the Tri-Delta House. Well, here is another example of why that is a useful donation) While driving back from our shopping, which also netted a big bag of Christmas M&M’s and some Wheat Thins, the doctor called and said that a slot in the trial opened this afternoon and Eli can start tomorrow. Which is amazing for so many reasons. So, no chemo now, and the last six weeks of being off treatment was not wasted. Please, say a prayer for the three kids ahead of Eli for the trial that for reasons that we can’t know were dropped or did not qualify or moved on. I want to think that something they were doing was suddenly successful, so they did not need to be a part of this trial. That is not likely the case. If they were agreeable to be in an innovative phase one trial with no real results yet, I’m sure their situation was also desperate, and we have worn the shoes of trial rejection, so I know that walk. I am hopeful that they found something more promising.

So, Eli will once again be among the pioneers of childhood cancer research - the lab rats - as part of the Pediatric Brain Tumor Consortium phase one trial of pomalidomide, an immunotherapy drug that may interfere with tumor growth and may stimulate the natural immune system to kill cells. We only know what it “may” do as far as the cancer, and as far as side affects. From what I understand he is the only medullo from St. Jude in the trial, but it is a consortium trial, so we can’t know what patients the other hospitals have enrolled. I’m hoping that through our social media we can figure out if there are more medullo. I think the most frightening side affect is the swelling at the disease sites. In a sister trial with a similar drug used in DIPG patients, the swelling was enough that it shortened their lives more than if they had done nothing. The trial was stopped, obviously, and DIPG will be an exclusion. Yep, it will re-open because there is nothing and they keep trying. That is the kind of ball game we are in now. Death is not a deterrent, but a side affect. So, these are the decisions that we face. If you want to shake some worry over decisions you face each day, I think I can help.

So, some extra prayers this week as we begin. I saw something this week that said sometimes the only step forward is a leap of faith. So, we are moving forward with a leap of faith. And, it looks like we will be here two weeks, instead of three more days. We are hoping that the doctor will let us go to the car show Saturday in Florence, Alabama, which is about three hours away, but we will just have to see how Eli is doing at the end of the week. I really don’t know what to expect. A friend that takes classes at the Memphis Harding University campus is bringing us some things from home tomorrow, so I will have an another t-shirt to choose from, and Eli will have some more movies.

Please, add a little one named Townes from Mississippi to your prayer list. He is not quite two years old, and we met them Friday as we both waited for Doctor Robinson. He was precious. They were after us, and I saw later that they learned at that appointment he had relapsed while on treatment. This young mother is rightly terrified. They have some options still open to them, so pray that they are able to route the right path to complete healing for this little guy.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.