Next Steps

We have been busy.  Appointments at both hospitals kept us driving around most of the week.  However, we got to visit with my first grade class on the 100th day of school, one of my favorite days.  The kids were counting their 100 snack and making necklaces with 100 fruit loops...awesome!

Today, we saw the neurosurgeon and had yet another MRI.  Still no fluid accumulation, so no shunt!  Yea!  She does seem to have a blind spot in her right field of vision, which causes her to prefer the left.  This may resolve itself, but we just have to wait.  Otherwise, they felt she looks great and they were all pleased to see how much she has grown since she was discharged - she has gained more than pound, and now weighs 11.5 pounds!

Wednesday's appointment was with Neuro-oncology.  They feel like Scarlett is doing great and we all agreed it is time to move forward with chemotherapy.  We get asked a lot why Scarlett needs chemo if the tumor has been removed.  Tumors start from one damaged cell.  That one cell copies itself over and over very quickly, drawing nutrients from the surrounding healthy tissue, until there is a mass of damaged cells that creates a large lump.  The damaged cells can also travel through the blood (or, as with Scarlett's type of tumor, the spinal fluid) and begin growing in other places.  Tumors that grow like this are malignant, or cancerous.  Scarlett's tumor is one that will only grow in the brain;  it is very likely to regrow into her brain, but can't go outside of the central nervous system (brain and spine).  Because it is such an aggressive type of tumor that is very likely to grow, we need to use chemotherapy to kill the malignant cells before they regrow or spread.

Chemotherapy will begin next week.  We have decided to have her receive treatment through a study developed by St. Jude Children's Hospital.  As long as she handles it well, she will stay in the study.  If the doctors feel she would be better off with a different treatment, they will do that.  Being in a study is good because it is a set procedure that has safety precautions built in, and others are having good results with it.  This particular study has been running for a few years, and is being done at Stanford as well, so we don't have to go to the St. Jude campus in Tennessee. 

There are a few steps we need to complete before she begins treatment.  First, she will have a port catheter placed.  This is a long term IV that allows the doctors to give medicines and draw blood without poking Scarlett's tiny arms or legs.  The surgeon showed us a sample; it looks like a button with a long tube.  The "button" will be placed under the skin of her chest, with the tube leading through a vein toward her heart.  This gets the medicines pumping through her system as quickly as possible.  This type of access port can stay in for years; she can still bathe, swim and play and it is much less likely to get infected.

She will also have a lumbar puncture to draw some spinal fluid from her lower spine (this is precautionary - they do not expect to find any malignant cells there, but it is required for the study.)  They will check her hearing, as one of the chemo drugs has been shown to affect hearing (they told us that if they see any hearing loss, they will pull her off the study and alter the plan).

Finally, we will be admitted to the hospital for her first round of chemo next Wednesday or Thursday.  This is the first of many treatments which will last about a year. We're nervous about how Scarlett will react to chemo, but they tell us that babies have it much easier than older kids or adults...which is not to say that it won't be hard, but it could always be worse.