Scan Results – January 16, 2019

Thank you to so many of you for the prayers and messages today! We can feel your love and support all the way out here in Boston. Today was a long day of appointments and information. I wish I could say that Emma’s scan results were definitely good. The results weren’t really great, but weren’t really awful either. So I guess that means they are somewhere in the middle, which always makes things interesting I guess.

Emma was a rock star today and did great with her scans. After sleeping a little extra she woke up happy and she ate a great lunch. Her dermatology appointment went well and Dr. Huang is very happy with how her skin looks. We then headed over to brain tumor clinic to see oncology and neurology and get the results of the scans.

As I said, they results are somewhat mixed. Overall the tumor is measuring very similar to what it was in October, however there is one area that showed some increased enhancement from the contrast. We were told this was only a small enhancement, and that any growth appears minimal. So overall, things looked pretty stable. Dr. Chi started with telling us that these results would not normally be enough to make her consider switching treatment, and that continuing what we are doing would be completely fine. If you can sense what is coming next it is a big “BUT” that has us feeling a little overwhelmed at the moment.

When Emma’s tumor showed growth in July and it was decided we needed to start treatment again, one of the options we discussed was a new trial that was opening, TAK-580. Dr. Chi thought it would be a good treatment for Emma, but at that time it was not yet open and Dr. Chi didn’t really want her on the lowest dose of phase 1, which is what she would be on if we waited for it to open. So instead we made the decision to start the treatment Emma is currently on with Actinomyocin-D and Vincristine. After reviewing the results of the scan with us, Dr. Chi said she wanted to discuss this trial again…not because Emma needs to switch treatments, but because she thinks the treatment would be really good for her and the timing might be good right now to try to get her on the trial. The trial is going to be getting ready to accept patients for the highest dosing that will be used in phase 1 very soon so there may be some spots open in the very near future.

There are several reasons Dr. Chi feels this is something we need to seriously consider. 1) This is closer to the dosing Dr. Chi was wanting for Emma on this treatment. 2) They have seen good results with other patients so far in the trial. 3) This drug is a designed to attack BRAF mutations in a tumor, which is what Emma’s genetic testing of her tumor shows she has. 4) Dr. Chi is unsure if Emma would qualify once this trial moves to Phase II because of the previous MEK inhibitor treatment, Trametinib, that she has done. This means the openings that will be coming, may be Emma’s only chance to get on the trial. 5) After seeing how Emma is physically handling the current treatment she is on, Dr. Chi said a change may not be bad for her physically.

At this point, our heads were now spinning with about a thousand “what if” questions. Dr. Chi also shared that if we do the trial, Emma would need to be in Boston for about 2 months while she started the trial, and then would have to return once a month for the rest of the treatment. This would mean some big decisions for our family and how we would be able to handle that. Before any decision can be made though, Dr. Chi needs to get more information on the status of the trial and timing. She said there are already around 4 kids on the wait list, and there will only be 3 spots open. So even if we do decide to try to get her on the trial, we may not be able to. So the plan right now is for Dr. Chi to get more information on the trial and likelihood that Emma could be on the trial, and more information for us.

Dr. Chi isn’t usually very opinionated about treatments, and typically gives us information on different options and then lets us decide what we think would be best for Emma, but she stressed several times today how much she would like Emma to do this if it works out logistically. She thinks it could be a very good treatment for her. The bad news with all of this is that we could potentially have some really hard decisions to make in the next week or so. The good part though is that Emma is in a place where she does not have to switch treatments because of alarming growth. If she would be selected for the trial we could have the opportunity for her to get a targeted chemotherapy that is designed for her type of tumor and could potentially be a really good treatment for her. However, if the trial doesn’t work out for whatever reason, we can still continue with the treatment that she is on because the results today didn’t show a lot of growth. So while are heads are spinning tonight with lots of information, and we don’t have a specific plan at the moment, we will have a plan in a few days. That could either be continue with what we are doing or could mean some big changes for a few months. For those of you wondering about the excess fluid in Emma’s abdomen, Dr. Chi thinks it could be drug related, but says Emma’s body should naturally absorb the fluid over the next few weeks and that we just need to watch her carefully as this could be an area at increased risk of infection as the fluid subsides.

I know we already asked for prayers once this week, but we could use some prayers for guidance in the next days as we try to make decisions as to what would be best for Emma. The good news is that we aren’t making this decision because what we currently doing isn’t working. We have been presented with what could be a good opportunity for Emma, and throughout this whole journey we have always made decisions based on what would be best for Emma. As always thank you for all of the prayers and support! We have two more appointments tomorrow and then we are headed home Friday and hoping that the snowy weather holds off long enough for us to get home!