Gabs is doing fantastic. She doesn't seem to be in any pain except for a few times when trying to pass a bowel movement (I'm assuming that this is due to the amount of muscle that was cut through during the 2 abdominal surgeries). She seems to be getting used to her brace, at least she doesn't cry anymore when we have to put it on her.
We saw her oncologist on Friday to discuss her treatment plan. Sometime within the next two weeks we will have a surgery scheduled to remove the port from her chest and stent from her urator. This needs to be coordinated with the general surgeon and urologist so we aren't sure when it will be yet. Gabs will do a urine test once a month to check for HVA and VMA, both chemicals that are secreted by neuroblastoma. She will also have MRIs done once every three months to check for any masses. Both of which will be done further apart as time goes on given that they come back clean. No chemotherapy is needed at this point. We will most likely be putting her on a drug called Accutane (sometimes used as an acne medication) for about six months. The purpose of this is to mature any immature neuroblastoma cells that may have been left behind. Neuroblastoma cells become more benign as they mature. We haven't made a final decision on this yet.
We feel this may be necessary based on some findings from her intussusception surgery. During the surgery, our surgeon found a small mass on her intestine that appeared to be scar tissue. He removed it and sent it in to be tested and found o ut that it was a very very small piece of ganglioneuroblastoma (a mix of malignant and benign cells). We aren't sure that this would have grown or spread but feel very grateful that he found and removed this. Given the fact that an additional piece of tumor was found that may or may not have been part of the original, our oncologist feels that it would give him (and us) some peace of mind to treat anything that may have been left behind.
Lastly, she needs to wear her back brace for three months, 24 hours a day other than diaper changes and baths. We are planning on having her wear it constantly for 6-8 weeks (the time it generally takes for bone to heal) then slowly wean her off over the next four weeks. We are still having some difficulty with the brace itself. When it was originally cast, her belly was very distended because of her intussusception and we are now finding that it just falls off her. No matter how we try and tighten it, it slides 1 to 2 inches down her body. We haven't had much success with the company that the brace was made by. They won't allow us to contact them in person (needs to go through a Dr or Nurse). We have decided to use a different company and have her brace remade. They stated that they normally use a thinner plastic that is less bulky and more comfortable for a toddler. We weren't able to speak with our neurosurgeon or his nurse (she didn't think we needed a new one made) but our fantastic Oncologist wrote a script for us. I have to say that we are so pleased with the oncology and general peds surgery departments at the hospital (even anesthesiology) but are a bit disappointed with the neurosurgery department. I guess you can't have everything!
Sorry if post seems very unemotional but I wanted to get down all the details of her care and treatment plan. Now that we are home, I will try and do a better job of posting more often. We will be watching and praying for the next 5 years or so that nothing relapses. Neuroblastoma that replases tends to come back much more severe and would require chemotherapy, radiation therapy and bone marrow transplant. I feel confident right now that this will not be the path for Gabrielle but we have no way to say for sure that this is the case. Please continue to pray for her recovery, no relapse and no neurological problems once the brace is removed. We can't tell right now if there are any deficits in her walking/moving because the brace causes her to move in such an awkward way.
Thank you for your continued thoughts and prayers! We have been completely overwhelmed by the outpouring of love and support during this time. We love you all!!