Tuesday, August 3, 2010

August 2nd Update

Well the first set of second opinions that we’ve gotten back aren’t very encouraging.  One high profile hospital responded that Isabella already received high doses of chemo during her treatment and that there was nothing more they could offer.  Most of the surgical options that we pursued agree that the tumor is non-resectable (although we are still following up with a doctor in Cincinnati that uses tiny balloons to remove tumors that were thought to be unresectable).  We are currently planning trips to Children’s Hospital of Philadelphia (CHOP) and possibly Duke who have agreed to perform a second opinion, but only if they can meet Isabella in person.

But what do we currently have as treatment options?

One of the latest advancements in brain cancer treatment is through the use of targeted vaccines.  With this treatment, a portion or all of the tumor is taken out and a vaccine is created based on the resected tumor.  This has shown great promise in adult trials, although unfortunately, they are just beginning trials in children.  There are several vaccine trials out there and we are pursuing them all.  Fortunately, portions of Isabella’s original tumor were frozen and kept at NYU and we are hoping that one of the trials would be able to use that tissue to create a vaccine.  However, we already know that one of the trials requires new tumor cells, and for better or worse, Isabella does not have enough tumor cells to be used (and we don’t even know if think it would be resectable anyway).  The other tricky part is that depending on the treatment/trial, the company can make the vaccine here in the United States, but we would have to go to another country to administer the vaccine.  Also, since this is also considered experimental, none of it would be covered by insurance.

There are also several alternative solutions that we’re looking into.  If you recall, we found a study that showed that a ketogenic diet (an extreme Atkins diet) was able to control the growth of cancer cells.  (Coincidentally, there is an article in today’s MSNBC that describes how cancer cells thrive and proliferate on fructose, a substance found in many common foods:  http://www.msnbc.msn.com/id/38528161/ns/health-cancer/). Unfortunately, Isabella was not able to handle that too well and we couldn’t follow the diet for too long, so we consider this a “last resort” option.  That doesn’t mean that we can’t alter our diets and we have already, reducing many of the preservatives and trying to go as natural as we can.

Finally, there is also the slimmest of slimmest of hope that this may not be recurrent tumor.  Our doctors at Mass General where Isabella received her radiation treatment suggested that we need to rule out necrosis, or scar tissue caused by radiation.  If you recall from one of my previous posts, it is very difficult to tell tumor from necrosis from a standard MRI.  So they have suggested that in two or three weeks, we go in for another MRI and see if and how the “spot” progresses.  We’re not holding out too much hope on this one since it is highly unlikely for scar tissue to just appear out of the blue, however, they did mention that on rare occasions, they have seen that.  Another option that we’ve considered is to have a surgeon go in and biopsy that spot to verify whether it is cancerous or not.

Thanks again for keeping up to date.  I know it’s not too fun reading about this kind of stuff.  We’re going to have some very difficult decisions in the next few weeks/months and it’s nice to know that we have so much support out there.


  1. I'll continue to pray for a miracle for our Isabella. As Yogi Berra said "it's not over till it's over ". May God shower you and Julianne with hope and blessings as you cope with this.

  2. Melissa Salazar DejkunchornAugust 3, 2010 at 2:24 PM

    Roneil and Julianne -- my prayers are with you. Please know that if you find some hope for a cure in the Cincinnati area (we have some pretty sophisticated children's hospitals from my understanding), you are more than welcome to stay with us!!!

  3. Praying and thinking of you all, let me know if there is anything we can do
    The Morins

  4. Julianne and Roneil, you have a remarkable daughter a true warrior. May GOd's will be done in her life and the family. Whatever happens she is a blessed little girl. No even cancer can take away the life in her eyes.My sincere prayers are with you and Fe. Much love
    Josephine Miller.


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