Looking for a rainbow

By jenrvball - April 28, 2021

The past 36 hours have been unexpected. Yesterday afternoon, Brian and I had a remote conference with Dr. Sholler who runs the DFMO trial out of Levine Children’s in Charlotte NC. This trial is aimed at a 2 year oral medication to help during maintenance called DFMO and has been studied for quite some time. The current trial that is open has added an additional low dose chemo in oral pill form called Etoposide. Charlotte’s had etoposide several times already during treatment and this dose would be a much lower dose for 3 week cycles for about 6 months. Then continued oral DFMO foe remaining 2 years. Some extra evaluations would be required (2 more bone marrow biopsies when we hoped those were all done) and some extra MIBGs. Here are the issues:

1.Charlotte would be the first ever on this trial out of the Neuroblastoma Vaccine study. They do not know how kids who have gone through vaccine will respond to the etoposide. Will the supposedly slight immunosuppression from chemo combat all the work we did during vaccine immunotherapy to amp up her response to GD2/GD3 surface proteins on NB cells so she can mount a defense?

2. The study window closes for Charlotte very soon and they want to squeeze her in for 4 days of appointments and evaluations next week in Charlotte (bone marrow biopsy, MIBG/CT, eKG, audiograms, blood work and drug PK studies at end of week after she takes first dose).

3. There appears to be no way to obtain DFMO alone for Charlotte so 6 months of chemo at her stage doesn’t sit well with us or our MSK Dr. Kushner.

4. They want our consent by tomorrow morning.

Once again, we find ourselves unnerved and alone in this decision. We have several different opinions and a dr who is Switzerland and no one could tell us a definitive go for it or no. Without knowing anything further in this experimental clinical trial world, we fly blindly with Charlotte in the plane.

Neither Brian nor I were prepared for the time urgency in making this decision. Yes we could go off study if we find side effects are not worth risk, but some of the side effects are late term—Etoposide is one of the largest culprits in kids developing a secondary malignancy. This is Sloan’s major concern. They promised participation would not exclude her from any future trials there nor vaccine boosts. But what are we doing here?

After many phone calls, emails, texts, internet searches, various other consults with people we deem a great resource in this matter, the dust is settling. We are left with some doctors who thinks this could be a good thing for someone like Charlotte, other doctors who have valid concerns, 2 dizzy parents, and a sweet happy little fighter who just wants to be a kid. Why are we even considering another treatment for maintenance? Because as amazing as Charlotte has done and as amazing as she looks and feels, kids who relapse are at a greater chance for another one. With each one it can be harder to treat and treatment resistance can form. Many researchers believe prolonged maintenance of some form is necessary and this is a 2 year trial. That would mean 3 years of maintenance for Charlotte after relapse. To get that far out would be a huge victory. We need to know for sure that there is nothing further to do that makes sense.

But if I can be honest...we are weary. We want to be done so so badly. We want that elusive crystal ball but it doesn’t exist. No one but God can know her outcome.

I’m so exhausted but I wanted and NEEDED to update to ask for prayers of clarity. Prayers that God will help lead us through. Look at the daily devotion below for TODAY that Brian found when he got home from his long work day. It reminds us that He is right here with us. I wish it gave us an answer, direct instruction! But it simply calls us to remember what faith can do. And so tonight, Brian and I will sit together and go over what we “know” instead of what we fear. We will lean into our faith that we will make the best call. Thank you for sending prayers our way at this time so we can do what is best for our baby girl