The first surgery was on 4/27/04. It was a craniotomy to debulk the tumor...or what they call a resection. Until we met with the neurosurgeon (the evening before surgery) we had hope that they would be able to completely remove it. In all cases that is the best case scenario. The neurosurgeon told us he knew that wasn't possible in Hadley's case. Mostly because of tumor location. He was able to get out about 90% though. That last 10 percent was and still is considered inoperable. The tumor margins were not well defined. Meaning that the tumor had not just grown in a benign fashion and caused damage simply by taking up room in the skull. It had actually invaded healthy tissue grown around and attached to arteries, vessels, nerves, glands etc. One knick could make her blind, destroy hormone function or kill her almost instantly. We were lucky. The biggest amount of damage from surgery and the tumor was to the cortico-spinal tract and motor strip...and the frontal lobe. Neither of these immediately threatened her life. She did sustain a knock to the artery that feeds blood to the front of her brain. The first night was very touch and go. The one and only time I've seen our surgeon lose his cool was when he came to check on Hadley in ICU a few hours after surgery. She was quite agitated and her blood pressure was out of control high. He reamed the ICU attending right in front of me. Hadley was in huge danger of a bleed without the high BP, because of the knick,this made it miraculous that she didn't sustain bleed and, best case scenario, have to go back in to surgery. She was in ICU for several days. We brought her home the first week of May looking like a prize fighter (her eye had to be taken out of the socket to get at the optic chiasm and put back) unable to walk and incontenent. She had so much swelling that it took a while for her eye to actually go back into the socket. The hardest part was that she didn't have the expressive language skills to communicate pain etc. We were released with 18 medications. Just a few weeks earlier we had no reason to believe she wasn't perfectly healthy.
30 days after surgery the residual tumor had more than tripled in size. She had to start chemo immdiately. We started with a clinical trial that failed quickly. It was a cocktail of 4 chemos that were really hard on her. She had 2 different central lines placed (short surgery). We spent a lot of time at and in the hospital. I honestly have no idea how I got through it. Keegan was 2...Liam was now 6 months old.
On 10-13-04, just 6 months later we were told that her only shot at beating the tumor was another debulking. This time was harder...we knew more and were a lot more scared to send her. Our amazing surgeon got a little more out than he did in the original surgery and Angela K and I literally squealed and jumped when we saw the scan in his office. The original tumor was the size of a large orange or small grapefruit. Yes, in a 3 year old's skull. The tumor was now a little bigger than a grape. On the scan it appeared that someone had dipped a pencil eraser in white out and dabbed it on the MRI. We were ecstatic. But, we had to start chemo again right away. A month later a port was placed in Hadley's chest and we began a new chemo regimen. This, too, failed.
We went through 4 failures before we started her latest regimen and a finally stable tumor. Our scan in Feb would have been our one year stable out of treatment. Now there are 5 tumors. And no possibility of completely removing any of them.
Did these awful surgeries do any good? Yes...they bought us time to TRY and beat this thing. Had we not done them and not gotten the opportunity to battle like we did I may never have been able to forgive myself for not exhausting our options. Would I consent to another surgery? No. Not without a promise of miraculous and total healing. Would I change the way we've done things? No. I honestly think we've done our best. My one regret is how late we found the tumor. I wish we had found it so much sooner...but who knows if the story would have a happier ending or a more heartbreaking one if we had. We'll never have the luxury of knowing for sure.