The MRI: Bella was a "write in" for her MRI today which seemed to come much faster than I think the nurses expected. Finding a vein to start the IV was much more of a challenge this time and they ended up using Bella's right hand (which means we get to help feed her...which I love...reminds me of when I fed her as a baby...love it!).
Today was all about getting the MRI. The big question is whether the cancer has spread to other parts of the brain or spinal chord. That will determine the course of radio-therapy.
The therapy: Bella will be receiving both radiation and chemo therapy. Pending Dr. Shen's, the chief oncologist, evaluation of the MRI, we will know how intense, how long and how often each treatment session will be. This first round of evaluations, counseling and treatments will all be done inpatient. Depending on Bella's response & side effects to the treatments will determine if future sessions will be in or out patient; however, it seems that Dr. Shen believes that future sessions will likely be outpatient.
The schedule: 7:00 am tomorrow morning, we go via ambulance literally across the street, for consult/orientation with radiologist, Dr. Williams. They will "take measurements and run a simulation treatment." Now we thought that would not include radiation, but it apparently will. No one seems to be able to tell us what method of radio-therapy they will use....despite my trust in CHOC, I'm a little pissed about not being able to be a bit more informed about Bella's treatment, to prepare her and compare with what I've been reading in the medical journals. From bits and pieces of hear-say and picking nurses brains, it sounds like they use the stereotactic method which makes me happy as there has been much documented success in peer reviewed journals like JAMA etc. Bella will receive a lower dose of radiation to see how well she will react to it.
2:00 pm tomorrow Bella will have surgery to insert a "port-a-cath"
Port-a-cath: The port-a-cath is placed under the skin on the chest. The catheter is then inserted into the superior vena cava vessel at entrance of the right atrium of the heart. This catheter can be placed in radiology by an interventional radiologist or by a surgeon in the operating room. It is approximately a one-hour procedure. The useful lifetime of a port-a-cath can be as long as three to five years. The port-a-cath can be felt under the skin and the nurse can find the entrance by locating the edges of the port-a-cath and inserting (cannulating) a special needle (called a Huber needle) into the soft middle section. Medications can be given through the port-a-cath and blood can be drawn from it eliminating the need for a blood draw from the arm. The use of a portable pump and port-a-cath allows the medication to be given over several days in the home setting rather then as a patient in the hospital. http://www.chemocare.com/whatis/how_is_chemotherapy_given.asp
7:00 am Wednesday morning our dear friend Irene will hang out with Bella while we meet with Dr. Shen for the full orientation on Bella's treatment plan. We will apparently receive a book explaining everything that Dr. Shen will tell us. Then, sometime in the afternoon, depending on how well Bella's port-a-cath feels, she may have her first chemo treatment.
Visitators: so, that's pretty much all we know today. I hope to squeeze more detail tomorrow out of Dr. Williams and Dr. Shen and our nurses. The nurses have been fabulous and so has Child Life. CHOC is a wonderful place to go through hell (I'll post info on how you can donate time, talent or treasure to CHOC), but, like any other place, it is imperfect and these few imperfections of course seem so much bigger than they are when all you're worried about it the end outcome so many miles down the road. Val asked Bella if she could pick three places she would want to go, she said #3-Knott's Berry Farm, #2-Disneyland, #1 (grab your klennex because I can barely write it)-Heaven. Bella's faith is so strong and it's such a joy and blessing to be her Father and learn so much from her faith and tenacity.
Okay, so that didn't have anything to do with visitors but, hey, we're exhausted! Visitors: we want everyone to come visit - BUT, we're just not sure when and how many. Tomorrow sounds like it's going to be a very busy and physically stressful day for Bella. I really want her to feel the joy of visitors but also am concerned with her ability to get rest and recover as quickly as possible. Additionally, her treatment will lower her ability to fight bacteria & viruses. Meaning (sorry), NO ONE WITH SNIFFLES is allowed in her room. And not only for Bella...Bella has a roommate! Kaylee is a 6 year old little angel with a booming voice and strong character who has been winning her battle for more than a year. We don't want her to catch a cold either.
We're trying to put together equip to be able to skype friends and family in who are not able to physically come to visit or might have sniffles and shouldn't come visit. We'll let you know how that develops.
Bottom line for visitors - we'll let you know...watch Val's and my newsfeed on our Facebook. For now, I'll continue to post on FB Notes, Blogger and here on Caring Bridge until I've found a preference.
Thank you all so much for your ongoing prayer and thoughts of how to help us...honestly, we're so very humbled by the physical, spiritual and material love that is being shared with Bella and our family. We do not by any measure wish to rebuff any symbol of generosity. This is still a bit of a surreal experience for us and we're still attempting to grasp all that is going on and how we'll be adjusting our life with this new entity that controls so much of our daily life. Your prayers for strength and healing are the most needed gifts you can give us for now. I know we'll need help in other ways later...we'll turn to y'all when we get there.
Thanks so very VERY much...Bella is one loved little angel...I can't imagine us having to survive this with out seeing that love!
Until tomorrow, sleep tight and God bless you all!
Sam
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