The beginning

As you all know by now, our Hannah was recently diagnosed with a brain tumor. On Tuesday, January 30th, Hannah had an MRI at 9 am at ELIH in Greenport to search for a reason behind her vomiting and recent headaches. This was simply a routine scan, and we had no anticipation of the results being something other than normal. Her pediatrician had already told me at one point "well, it's not a brain tumor" so we were expecting that this scan would show nothing and we would again be back to square one in trying to figure out what was going on.

I received a call from Dr. Mercier, Hannah's pediatrician at 1:30pm that same day. He told he they had found something on the MRI. Still not thinking anything was wrong, I said, "found what?" He said a tumor. The results showed a brain tumor as well as fluid built up on the brain (thus the result of the newly developed headaches). I was advised that the doctor had already contacted a neurosurgeon and he was waiting for us. I then asked if I had to go get her out of school, or could it wait. No, it could not wait, I had to go then. I picked her up, trying to act like I wasn't falling apart and we met Dave at the neurosurgeon's office, an hour away. We met with Dr. Michael Egnor, who showed us her MRI and explained that due to the tumor size and location, it could be one of three types, an astrocytoma (non malignant, no further treatment required after surgery), a medullblastoma (malignant, would require radiation and chemotherapy to survive) or an ependymoma (malignant, and low survival rate). Based on the all of the factors and the scan, he thought it was most likely a medulloblastoma-YES< malignant. He told us that we needed to get this treated right away, not because of the tumor, but because of the resulting hydrochephalus (fluid build up on the brain because the large size of the tumor was blocking the flow of the cerebral spinal fluid). He suggested that we check Hannah into the hospital the next day so that she could start on steroids to reduce the fluid build up, and that she have surgery to remove the tumor on Friday. We had no knowlege of this doctor's credentials or history in this type of surgery, and were hesitant to make this momumental decision in his office while still in shock. He gave us a few other names of surgeons in NYC, but said it was imparative that even if we chose not to go with him, that Hannah has the surgery no later than Friday.

We came home that night and started a whirlwind search with Mike and Kathleen (Dave's brother and sister online). More than anything, we were searching to be sure Dr. Egnor did not have any glaring reports of negligence. We found nothing but good reports, and since our time was limited, he was recommended by our pediatrician and we felt comfortable with him, the next morning we contacted him to tell him we wanted him to do the surgery. Hannah was checked into Stony Brook Hospital on Wednesday, January 31st to prepare for her upcoming surgery to remove the tumor on Friday, February 2nd.

The surgery revealed that Hannah had a medulloblastoma, an aggresive malignant tumor of the 4th ventricle, right over the cerebullum. The spinal MRI did not reveal any other tumor sites. Hannah was in surgery on February 2nd for over 6 agonizing hours. The doctor was able to remove all of the tumor during the surgery which is very important going forward. Dr. Egnor is a wonderful doctor, and he is confident that with radiation and chemotherapy, Hannah has a very good prognosis for surviving this and remaining cancer free.

Hannah came out of surgery with an external drain to allow the fluid to drain externallly while the brain was healing. The hope was that her own body would begin to absorb the cerebral spinal fluid and function normally again. Unfortunately, Hannah's body did not reabsorb the CSF on it's own and on February 8th, Hannah underwent a second surgery for hydrocephalus. The procedure was called a 3rd ventricular ventriculostomy, which is a procedure where the surgeon makes a small hole in the bottom of the 3rd ventricle in hopes that the brain will reroute the CSF and it will be absorbed naturally by the body. The surgery went well and it appears to be working at this time. This is something though, that will always need to be monitored since there is no guarantee this hole will continue to function throughout the rest of Hannah's life. Thankfully, the ventriculostomy did preclude the need for an internal shunt.

On February 14th, Hannah was transferred to St. Charles Hospital for in patient rehabilitation. Due to her lack of movement after the surgery caused by pain and her fear of moving because of the pain, Hannah was unable to use her left arm at all, and she was very weak. When we went to St. Charles, Hannah could not sit up, eat, walk or perform any functions on her own. We are happy to report though, that after a week and a half of therapy, she is coming along nicely and makes improvement almost on a daily basis. She surprised everyone one day when Dave was working with her arm and she moved it on her own. We were all so happy! Since then, she has continued to be able to move that arm, and now can raise it, and even squeeze her fingers a bit. She is still working on her balance, her ability to sit up, and walking. Dr. Egnor says that due to the mechanics of the surgery, many patients experience this lack of coordination and ability to walk but it does come back after time and therapy.

We took Hannah home for an overnight visit on Saturday, February 25th. She was so happy! Even though she was very weak and tired, she was smiling so much, it was wonderful to see. On Sunday morning, we noticed a large bulge on the back of her head and rushed her back to Stony Brook ER. The doctors say it is a collection of the CSF, and that it does appear she does not need a shunt at this time, and that they anticipate it will reabsorb over time by itself. We have to continue to watch it.

Hannah will have one more procedure here at Stony Brook. On Tuesday, February 27th she will have a mediport inserted and a lumbar tap. The mediport is a small device placed under the skin in the chest which will allow the chemo docs to insert the medicine without having to insert an IV everytime. The lumbar tap is need to ensure no cancer cells are found in the CSF following the surgery.

Dave and I have been overwhelmed and uplifted by the amount of loving support from everyone. Your thoughts and prayers have helped us and Hannahand Colby to muddle through this terrifying ordeal. Hannah has people praying for her all over the world! Your support is very much appreciated by our whole family.

I hope to keep this blog updated on a regular basis so that everyone can be easily updated on Hannah's progress. You can add to the blog also if you choose, or just view it. We thought it would be an easy way for everyone to stay abreast of where we are and how Hannah is progressing. XOXO Kim and Dave