Thursday January 3rd we picked up more test tubes to continue the work on the Cushings disease as we have been told her Cortisol levels were a bit high. This is a 3 day saliva test that must be performed at a specific time each day and must have a certain amount of saliva.
Friday January 4th we arrived at Johns Hopkins to have a meeting with our new team of doctors at the Children's Cancer Ward. We are very happy with JH and couldn't ask for a better hospital or team of doctors and nurses. We were there from 1pm until 7:3o pm reviewing everything. Haven did two pee tests and had 8 viles of blood taken - to perform more testing on other types of possible diseases and to see what here levels were at. In a somewhat short version here is what we know for now...mind you there is a bigger list of things that will be done but the doctor didn't want to overwhelm us! (RIGHT)
1. Very rare form of Neuroblastoma (so rare we were pushed hard to sign a consent PACKET to have her tumor tested for research and to be published in medical journals). This includes the rare symptoms of high blood pressure and high heart rate.
2. She has 3 diseases currently caused by the cancer: Neuroblastoma tumor, Cushings Disease, Hypothalamic Dysfunction -- I have links to all of these at the side of the blog.
3. Tumor is confirmed located on the spine. It is behind the stomach - between the kidneys - on the spine. It is bigger than they originally told me on the phone - as he didn't want me freaking out at home. He wanted to review it with us in person and so we could see it.
4. She is confirmed that at her level of cancer she is at least in the medium risk category.
5. Surgery will take place in the next few weeks - she will have 3 surgeries at the same time. Main surgery is to remove the tumor for testing. 2nd will be to extract bone marrow from two different places (each side of the back of her pelvis). 3rd will be to implant a permanent tube in to the main artery of the heart - this will remain there for a long time. The tube will stick out from her chest and will be where they will take blood, insert IVs, and perform Chemo treatments.
6. She is confirmed to have Chemo after surgery and it will most likely be for about 6 months - with the way the doctor sounded. As the Chemo is need to kill the cancer and help in the reconstruction of the Hypothalamus.
Although most of it is not set in stone it is general in:
Wednesday Jan. 9th meet with the surgeon to review the procedure of the surgeries and how long it should take if all goes to plan and her recovery and what she will need during that recovery period.
Thursday Jan. 10th we have the first MRI - this will be to scan all of her body with a focus on the spinal column. This is to confirm where the tumor is, how surgery should be done, and if it has branched in to the spinal column.
We will not know the exact date of the surgery until the mIBG is scheduled. This test is extremely important as it is a specific test for this type of cancer only. Therefore, it is not performed that often so scheduling it with an anesthesiologist is rather difficult. mIBG is a radiation treatment scan. They will inject radiation in to her veins that must go through her system for 24 hours. Then for 3 days straight she will be scanned by a specific machine for 2 hours at a time. This radiation will attach itself to anything cancerous in her body. Allowing the doctors to know how much cancer there is and where it's at. They will not remove the tumor before having this scan as it makes finding all the cancer extremely difficult.
Bone marrow will be sent off for testing and research as well. This will tell us how she got the cancer, what other cancers she is capable of having later in life, and where it has affected the body. We have already signed the consent form for this.
As we find out more I will keep everyone up to date. We should have the results by Monday on the latest round of Cushings. Blood tests should be back Monday from Friday's extraction. We will know more throughout the week and the next few weeks.
Kris' family will be flying in and driving in over the next few weeks to be with Haven and to help us out. We're very appreciative of them and look forward to the help. Haven is excited about all her grandparents visiting and has already designated where they will all sleep. She is in good spirits but wants to know everything we're talking about and everything that's going on. She's way too smart. We discuss pokes and doctors and she likes to know all of their names and will describe them by their clothing and hair.
My parents live near us (pretty close actually) and will be here for us and her. It's a nice comforting feeling. My grandma and Aunt Candy are due to come out after surgery to see her. My dad is going to go get them.
Love to you all - talk soon!