Tuesday, Feb 27th

Today Hannah had two more procedures done-insertion of a mediport and the lumbar tap. We were uncertain if these two procedures would actually go as scheduled since the night before, in Stony Brook ICU Hannah was given an incorrect medicine, and given quadruple the amount she should have been. Thankfully, it wasn't something that hurt her, but it was very scary for us.

She came through the procedures very well, and tolerated the anesthesia (a word I couldn't even spell before this) very well, much better than from the other two surgeries. She is still sore and complaining of back pain, but they are not sure if it is associated with the lumbar tap or not since it's not in the same area.

On Tuesday night we traveled up to Boston with Hannah so that we could begin our process of setting up her proton radiation treatment. Hannah made the trip fairly well, but I wouldn't want to do it again anytime soon with her in this condition. We are at the Holiday Inn right now, awaiting our insurance approval for Hannah to be accepted into their inpatient rehabilitation at Spaulding Rehab Hospital. Hopefully that will come through by Thursday, when the hospital says they will have a bed ready for her.

More tomorrow on our progress.
Kim and Dave

February 8, 2007

It seems that Hannah has failed the external drain test. As they lowered Hannah's bed, and tried to decrease the work of the external drain to see if her brain would absorb the fluid normally, she started having headaches, very painful headaches. There are two options now, an internal shunt or a ventriculostomy.

A shunt is a mechanical device that is inserted in the brain, and runs down into the stomach. It would be something that Hannah would have to be aware of for the rest of her life. She couldn't do any contact sports, and there is always a chance of malfunction of the shunt (which happens quite a bit).

The ventriculostomy is a relatively new procedure that not many neurosurgeons are performing. It is a brain surgery where the doctor drills a hole through the bone into the third ventricle. This hole will allow the fluid to drain, and find a new pathway. If it's successful, it eliminates the need for a shunt. Hopefully it would be permanent, but there is no guarantee that it wouldn't close up in the future. Something we will have to monitor forever.

The doctor thinks she is a good candidate for the 3rd ventric, so today he performed the surgery. Everything went well until we were in the surgery recovery room. The incision for the surgery is at the top of the head, in the front. Hannah's head was wrapped like a car accident victim, around her whole head with gauze. She was very agitated and in obvious pain. They determined she was stable, she was coherent, so Dave left to go back to the office. She really seemed to be thrashing and uncomfortable. We were just waiting for the ok to go back up to her room in the Peds ICU. I walked around to the other side of her bed and noticed quite a bit of blood on the bandage on her head. It had soaked the bandage and was running down the side of her head. I called the nurse over to take a look. She said calmly "there is a bit more blood there than should be."

Then, things started happening very quickly. All of sudden there were several people around her bed, doctors and nurses. They were paging the neurosurgeon and his assistant. He didn't come right away, so next they paged him STAT. Pretty soon the recovery room doctor in charge was at her beside. A nurse brought the phone to me to ask if I wanted to call my husband back. I called him to tell him "Come now, there's a problem." As I was on the phone, the neurosurgery fellow, came running in. He started to remove the bloody bandage from Hannah's head when all of a sudden the blood started shooting out. Not just running out, SHOOTING across the bed from her head.

I was petrified. I thought she was dying. This was the scariest point by far in all of this. Seeing blood shoot out of your daughter's head from the incision is pretty shocking. The doctors applied pressure to her incision to attempt to stop the flow of blood. They paged the Dr. Egnor, the neurosurgeon, and asked him if they should rush her back to surgery or do something in the recovery room. What had happened was that when they closed her incision in surgery, there was an artery that was left exposed. When closing up the wound, they pinch the skin together, because when it heals, it will constrict, and flatten out. So, even though it looks like a big lump and a lot of extra skin, it flattens out and lowers over time. When pinching the skin together, they accidentally included an open artery. The artery continued to leak blood, so when the bandage was removed, it was pumping blood out through the open artery.

The team decided that they would put staples on the incision to close it in the recovery room. They explained to me that they could give Hannah a numbing shot, but that would be as painful as the staples. So, I told them to just do it. Next thing I knew, the doctor had a staple gun (it looked just like a regular big staple gun) and was on top of Hannah's bed, with the gun on her head. They put two staples in Hannah's head while she was conscious and aware. I don't think she remembers many of the details, but she does remember them putting staples in her head. She didn't even flinch when they did it, she was already whimpering from the pain.

To top it all off, the iv in Hannah's arm wasn't inserted properly. I asked them why Hannah's bed was all wet. There was a leak when they connected the line to the iv, and all of her pain medicine was draining onto the bed, instead of into Hannah's body. Why? I don't know why.

What a day. The ventriculostomy seems to be doing it's job. Let's pray it holds.

Kim and Dave

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