August 2nd Update

Posted by in blog, family

I know many of you have been wanting a full update on what’s going on, and I am sorry that it has taken so long, but here it is.

First, I want to thank so many of you for your continued prayers and MANY demonstrations of physical and emotional support over the last month. We are so grateful.

Ok, so here’s what’s been going on:
Sarah had successful surgery to remove the tumor on July 12th. The doctor is confident that he extracted most if not all of the tumor saying, “her brain looks very clean.” Since then, she has been recovering from the procedure remarkably well, likely due to her age and healthy habits.

On July 26th, her staples were removed (44 staples total!) and we met with the radiation oncologist. It was here that we discovered that the pathology report was not as we initially thought – a meningioma (very benign tumor), but instead a oligodendroglioma (I even gave you a cellular picture!), which is, as the nurse so simply put it, “not entirely benign.” These particular tumors come in two varieties – class 2 and class 3 – and her’s is a class 2. Where class 1 went, we will never know. Class 2 means slow growing and less worrisome. In fact, if she was not experiencing other symptoms, and the tumor had been much smaller, surgery may not have been needed. Of course, this thing was causing a ruckus, so it was time to get rid of it! I would encourage you, faithful reader, not to research this tumor on the internet, there’s much scary information, and most of that won’t apply to Sarah’s situation. We await further testing on the tumor to see if it has a “typical” chromosomal abnormality that they like to test for, but won’t alter future treatments.

Since this particular tumor can grow back, it is essential to be sure that every cell has left her brain. This is where radiation comes in. Our doctor is recommending Sarah undergo a more recent development in radiation therapy called “Proton Therapy.” If you’re a researching type, you can read up on this. Simply speaking, typical radiation uses photons (like the torpedoes from the Enterprise) to blast a concentrated area of cells, hopefully killing the bad ones, but also likely damaging healthy cells as well. Proton therapy has a lot of math involved, but it’s more targeted form of radiation which stops DNA from replicating, and things that don’t replicate, die. That is the plan for this tumor: DEATH. It’s generally safer, and has less potential for, and less severe side effects. All of those are good things. We are having a slight hang up as of today (August 2nd). Proton therapy is rather expensive, and there are few hospitals that even have the machine (University Hospitals here in Cleveland is the only in Ohio as far as I can tell), so our insurance doesn’t currently agree with our doctor that this is the best plan. So, if you’re the praying type, please pray that they would be convinced otherwise in the next few days. Aside from this, our insurance company, Medical Mutual, has been great through this whole process, so don’t be mean to them on Twitter or anything.

The day following the radiation oncologist appointment, we met with the neurooncologist. Dr. Rogers was yet another in fantastic caregivers at UH.

Actually, can I take a moment to say how AMAZING all the staff at University Hospitals has been? The neurosurgeon, Dr. Bambikidis, the radiation oncologist, Dr. Kumar, Dr. Rogers, and the endless number of nurses, therapists, counselors, anesthesiologists, and office staff, have just been fantastic. I know we have great hospitals here in Cleveland, but I wanted to just say we now know just how great!

Dr. Rogers explained that following 6 weeks of radiation therapy, Sarah will begin 6 months of chemotherapy. This chemo is designed to continue the work of the radiation at a chemical level. In some ways, it will just prolong the effects of the radiation. Fortunately, she will be prescribed a drug called Temodar. This is an oral chemo that she will take prior to bedtime only 5 times per month during that 6 month period. While it’s still nasty stuff, she’s unlikely to spend the day vomiting or lose her hair like many people think of when they think of chemo. It might weaken her immune system a bit, but they will keep a close eye on her to keep her safe.

After this process is complete, they will schedule regular imaging appointments to be sure the tumor is not returning. No one has given us any information on what will happen if it were to regrow. Of course, the hope is that all of these treatments eliminate it permanently.

All in all, she’s feeling much better, and gaining strength and losing surgery pain each day. The boys came home following our appointment with Dr. Rogers on July 27th and it has been great to have them back.

Thank you all again so much for all you have done and all your prayers on our behalf. We are being cared for in ways we would never have expected.

Thanks for reading – I’ll see you here again in a few weeks.