End of Day 2 Update

We were told and knew to expect up days and down days.  Today we experienced a little down then up and ended with a little down.

The downs:

Plans & scheduled procedures from yesterday were changed this morning switching the radiation consult & simulation with the port-a-cath procedure - a procedure that I particularily wasn't looking forward to for Bella.  The port-a-cath procedure went well and quick this morning with little discomfort for Bella throughout day.  The port-a-cath is a catheter inserted underneath her skin and then hooked into a main vein to facilitate easier and more direct application of medication, IV drip, chemo therapy as well as for drawing blood for lab tests.  This is in place of a regular IV and can be accessed easily each time Bella has to return to outpatient therapy treatments or inpatient procedures and avoids that pesky and uncomfortable process of poking around to find a vein.

After recovery and being delivered back to her room, we were informed that Bella tested positive for VRE (Vancomycin-resistant Enterococci), a medicine resitent bacteria (details:http://www.cdc.gov/HAI/organisms/vre/vre.html)  This requires Bella to be in isolation, i.e. she can't go to the playroom, can't go walking around the halls, etc. - guests to her room must put on a charming yellow coat thingy and remove upon exiting to reduce the risk of bacteria making it out around the imune system suppressed children on the floor due to their chemo or radio therapy.  They moved Bella's roommate out and we thought....hmmm, not a bad thing - Bella gets this nice room to herself.  Well, the day ended with a little downturn and they moved Bella to a much smaller, ugly room with a small porthole for a window.  They did this move after I came home to spend some time with Liam (who misbehaved a bit today but was excited to see Daddy).  I understand their need to isolate Bella but a closet to quaranteen her is not acceptable.  Will attempt to change upon the personnel change in the morning.

The up:

Visited with her radiotherapy doctor, Dr. Williams, this afternoon.  Bella was excited to be transfered there and back via ambulence to a facility directly across the street.  Immediatey was impressed with Dr. Williams' head nurse, Martie - she was wonderful with us and Bella.  Dr. Williams began the meeting with info that they will do radiation treatments on the whole brain and spine.  She was interrupted and had to go to another room so we instantly assumed that this meant that the cancer had spread down the spinal column....a very bad thing - our hearts sank.  Dr. Williams returned and we inquired....she gave us the great news that it had NOT spread to the spinal column!!!!  Whew!  The treatment to the whole Central Nervous System is entirely preventative.  

Bella will receive focused photonic radiation treatments directly to her brain and spine.  The first 13 treatments will be to the brain and spine and will occur daily (reduced from the normal 20...both Dr. Williams and Dr. Shen, Bella's oncologist, felt that 20 were not needed at this point and didn't wish to subject Bella to the full 20 to avoid prolonged or certain permanent side effects).  Then there will be 18 sessions focused directly at the tumor in the shape of the tumor from multiple beams around Bella's head.  In the simulation treatment session, Bella will get a head brace made that conforms to her head and measurements will be taken to ensure accuracy of the focused photon radiation beams.  This article breaks it down fairly decently with the added bonus of a proton radiation comparison:http://www.cbtrf.org/resources/articles/types-and-modalities-of-radiation-therapy. I'll likely blog on this a little more in a separate blog because it is actually very interesting to read about the different modalities of radiation surgery - for example, there are compelling positive results from carbon ion treatments but we'd have to move to the mid-west to receive that treatment.  Rest assured, that I have not yet found an article (peer-reviewed or othewise) that contradicts the positive success rate of this type of radio-therapy combined with the planned type of chemo-therapy.  Dr. Williams and Dr. Shen work very closely in tandem as a treatment team - Val and I felt very comfortable and received many answers to many questions.  

Bella found out in our consultation that one of the side effects will be the temporary loss of her hair.  She was fairly upset as we weren't able to prepare her for this news.  Daddy finally gave in - after all her therapy is completed, she gets to have her ears pierced AND once we find a new home for her Guinea Pigs, or build them an outdoor enclosure, we will adopt a Chihuahua.  It'll drive me batty but hopefull the cats and I will be able to spend some quality time in the garage together.

Bottom line from Dr. Williams - Bella's condition is treatable and a full recovery is expected!

I'll add details as days progress.  We meet tomorrow morning at 8 am with Dr. Shen for a full consultation and then, likely in the afternoon, back to radiation for the simulation and setting. Since the schedule is in such flux, we'll post updates as to our whereabouts and guest visit info on our Facebook status.  

Thank you everyone for your prayers and support...we're getting there!  The highlight, I think, of Bella's day was being able to sing on-air with the teddy bear given to her by her teacher Mrs. Robinson.  CHOC hosts a radio show called Radio Lollipop that's broadcast on the hospital TV.  Kids can make requests, participate in competitions, tell jokes, sing, meet famous personalities etc.  Since Bella was in isolation, we were able to call in.  I'll post the video when I can!  It was adorable and she handled her radio debut like a pro!!!

Also, I'm going to drop posting on the Facebook notes page and will now exclusively keep blog/journals on CaringBridge.org and on taleofbella.blogspot.com.  Bella, Val and I are putting together a strategy for those who have expressed interest in giving.  There is a function for that on Caring Bridge but we have to set up to where the funding will be directed (we also have to choose to where it will be directed).  We're discovering many children at CHOC in need and there are numerous ways to give toys, books, DVD's, VHS tapes, activities, etc...we'll be working as a family to help share the love that you're showering upon us with others who are also in need.  Again, thank you so much...this has been an overwhelmingly humbling experience on physical, emotional and spiritual levels.  Keep those prayers going...they're working!