Having a C-Cation
Sorry for the delay in making this update. We know many of you have been praying for Lorelei since we received the disappointing news that there was not a full response to the extensive 6 months of chemotherapy Lorelei endured. We've had several in depth conversations with doctors since receiving the PET results. And we've prayerfully made a decision regarding the path we will take.
Dr. Geister and Dr. Keole drew up three options for us to consider and one of these three options is the one they felt was best for Lorelei. They consulted with renowned experts around the world before coming to their recommendation. Here are the options we were presented.
- Do a stem cell transplant right now. This would be considered the most aggressive treatment route. It also has the highest cure rate; 90%. To do a stem cell transplant they would collect Lorelei's white blood cells and freeze them while they treat her with five days of very high dose chemo to wipe out her bone marrow. About the time she is closest to death they would give her previously frozen white blood cells back in hopes she would regrow new healthy bone marrow. After she recovers they would begin radiation at the lowest dose possible. This route is attractive because it is the most proven route to the highest cure rate. But a stem cell transplant is a miserable procedure and is not without risks and if there is any way to avoid putting Lorelei through it, we prefer it.
- Biopsy the "resistant" area of the main mass and treat/radiate accordingly. If the biopsy confirms it is indeed still Hodgkin's Lymphoma, do a stem cell transplant and follow that up with radiation. Cure rate for this option is also reported to be 90%.This route seemed attractive to us because it would allow us to know exactly what we're dealing with. Is the spot that's glowing on her PET still Hodgkin's Lymphoma? Or has it transformed to some other type of cancer or is it possibly just some sort of inflammation? The biopsy would be done by a thoracic surgeon via a "left second intercostal exploration" to allow them to access the area of the main mass that is still glowing on the PET scan. But that spot is right on top of Lorelei's heart and surgery within the chest cavity has risks of its own. The benefit of knowing more about that glowing spot is that we could possibly treat in a manner with less problematic long term risks. But it is also possible that the surgeon could "miss" that spot and we might make a decision to treat less aggressively than needed. And why put Lorelei through a risky surgery if we can avoid it.
- Begin proton therapy immediately at higher doses and do a "boost" in the resistant area. Follow up with a stem cell transplant only if there is a relapse or failure in achieving remission. This route offers an initial "cure rate" of 70% with out having to do a stem cell transplant. If Lorelei was unfortunate enough to be part of the minority that did not achieve remission or had a relapse after proton therapy she would still have the option to have a stem cell transplant (SCT.) 50% of these people (the 30% not first cured) will be cured with the subsequent SCT which results in an ultimate cure rate of 85%. This route is the path recommended by the expert at Stanford and other leaders in treating hodgkin's lymphoma.
Our doctors have offered to send us for a consultation with a transplant oncologist. They recommend going to Baylor Medical in Dallas or to see Dr. James Armitage at UNMC in Omaha. We feel it is unnecessary to do so at this time because we feel very confident that the immediate proton therapy route will put Lorelei into a lasting remission. We'd rather cross the transplant bridge if we come to it.
So we've decided to go with option #3.
Lorelei will begin proton radiation on July 30 if all the preparation goes as planned. She's decided to forgo her first semester at OSU. (This was a difficult decision.) It will allow her to concentrate on becoming well without the added stress of a first semester away at college. She was a little bit concerned that she'd be bored but we reminded her about football season and that she'd have the opportunity to go to more of Bradley's games. Plus, we're looking into some work she can do for the Thunder during the fall. She might even take a few classes online. If her next PET scan looks positive we can enroll her in OSU for the spring semester.
Since there are absolutely no medical things she must do this week we have declared this week to be her C-cation. A complete vacation from cancer. No doctors. No hospitals. No IV's. No shots. No meetings. No surgeries. No tests. She's staying up late playing video games and sleeping in and hanging out with Bradley. For this one week she gets to be a normal 17 year old. The only difference is that we can't resist rubbing her fuzzy head. That soft hair growing back is the only reminder this week that she's been fighting the big C.
Posted on Mon, July 23, 2012
by Andrea Decker