More Scans, More Answers

So I mentioned in the last post that Dr. Wolff (from Tufts and previously from MD Anderson) did not rule out radiation scarring in Isabella’s brain.  MRIs are open to interpretation and does not distinguish readily between tumor and scarring.  Based on some of Isabella’s clinical symptoms, there was still a possibility that this wasn’t tumor.  Julianne found a study being done at the National Institutes of Health (NIH) in Bethesda, MD, where they were doing a special MRI (with spectroscopy) which looked at other characteristics in the brain.  The study is to see whether this MRI with spectroscopy can provide more insight into whether a suspect area is tumor or scarring.

We drove down to Bethesda this week to take part in the study in hopes that the more detailed MRI would put to rest what is inside Isabella’s head.  Unfortunately, we did not receive the answers we were looking for.

Based on the scan results, the doctor is certain that the lesions are indeed tumor.  Also, based on some of the measurements, they showed that the tumor has grown and that it appears to be highly aggressive.  The worst part is that the scan showed two new spots on Isabella’s right side of her brain.  It is extremely uncommon for tumors to “cross hemispheres”, so the doctors suspect that tumor cells broke off, traveled through the spinal fluid to the other side.  We are scheduling a spinal MRI next week, but this new piece of information is extremely troubling.

Also, we have been in touch with a neurosurgeon at Robert Wood Johnson Hospital in New Jersey, where they have one of the MRI guided laser treatment machines that I’ve written about in the past.  These laser machines are able to treat tumors that were previously considered inoperable.  However, these laser treatments are more suited to tumors that are in chunks (focal), as opposed to tumor cells that are more spread out over an area (diffuse).  We met with the doctor yesterday on our way back from Maryland, and unfortunately, since Isabella’s tumor has some diffuse components, he does not consider her a candidate for the laser surgery.

If there is anything positive to gain from this new information is that the new lesions found on the right side appear to be focal and in an area that may be resectable.  One of the other treatment options that we spoke about previously is immunotherapy (or vaccine treatments).  But in order to create the vaccine, you needed a certain amount of tumor and Isabella’s was not resectable at the time.  We are now discussing with our oncologist to see if we can verify that the new tumors are resectable, and if so, we would like to collect it for use in a vaccine.  I should also mention that the vaccine would most likely not “cure” the cancer at this point, but possibly only extend survival.

So, to summarize everything, here is where we are.  Our only option at this point is chemotherapy, and we will be looking to start chemotherapy very soon, possibly next week, following a spinal MRI.  However, before we start, we would like to resect the new tumors if possible to be used for immunotherapy.  One downside to surgery to resect the tumor is that it would delay chemotherapy further, from a few days, to possibly a few weeks.

In the meantime, we plan on enjoying the upcoming Halloween.  We’ve already bought Isabella some special, no sugar, candy that she will be able to eat on Halloween.

Thanks again for keeping up with us through this difficult time.

Back Where We Started

So over the last two years, Julianne has been scouring the Internet for any and all treatment options for Isabella.  As I’ve written, her tumor is extremely rare and very few people have worked with it before.  Just to show how rare, she only found one case study that referenced her particular tumor type where the patient responded to chemotherapy, even after recurrence.

As we got the news of Isabella’s recurrence, we have been working with our oncologist on different types of chemo treatments that we can try (informally, they’re called cocktails as they mix and match several types of chemotherapy to see what gets the best response).  Of course, we brought up that case study for the single patient and our oncologist informed us that she knew the doctor that worked on that case study and that he had just moved to Tufts Medical Center in Boston.  We contacted him and he agreed to see us and look at Isabella’s case.

We met with him for a couple hours two weeks ago where we basically went through our entire history of treatment and he briefly looked at the latest scans.  The good news is that he still hasn’t ruled out radiation necrosis.  We also spoke about what our options are if it is decided that it is tumor.  He mentioned that although Isabella’s tumor type may be rare, it appears to be of a type that responds to chemo, even after recurrence.  So we were inspired that we should never give up when treating this tumor.

So here we are, more than three months after a routine follow up MRI showed some new areas of concern in Isabella’s head.  Back then, we weren’t sure if it was tumor or radiation changes, and today, we’re still not sure.  We still don’t have a treatment

New Additions to the Family

We recently bought two new pets for the kids, sugar gliders, also known as sugar bears.  These cute little furry animals are part of the marsupial family and come all the way from Australia.  The attractive features they bring as pets are that they are clean, friendly, and need relatively little maintenance.  We’ve had them for about a week now and are still going through the bonding phase, and we think they are getting a little more used to us now. 

Here are a couple pictures and videos of “Oriette” and “Squeeky”, our new sugar gliders.  (FYI, Annalise wanted to name hers Oreo because it was black and white, but since it is a girl, she wanted the name to be more feminine, hence, Oriette!)

Click each picture for a larger view.