Thursday, November 19, 2009

Two Years

Had you told me 2 years ago, you will be ok, you'll get through this, everything will be fine, honestly I wouldn't have believed you. All I could think about was the CT scan that we saw with the golf ball sized tumor in Lukas HEAD!! It was in his head, possibly in his brain! How could you say it would be ok, you'd get through it? How, I just couldn't believe it. One of the things we were told was treatment would be aggressive, there isn't a cure and there is a good possibility that he might not make it through the chemo. Then we were told it wasn't a brain tumor, that it was Neuroblastoma and it was ALL over his little body. He was diagnosed as Stage 4. We removed his adrenal gland that was the primary tumor, couldn't take out the tumor in his head yet, massive blood supply-VERY dangerous, so we started chemo, got into a groove, a routine, a "New Normal". Lukas kept having headaches. They should be going away now right? The tumor in his head was supposed to be shrinking. It didn't. Then we have to make the decision to stop chemo and try radiation, craniotomy was discussed, but was deemed a last resort. Stop the poison from going into his little body and our ally, our defense against the cancer to try and kill the enemy in my little baby's head, my 13month old baby's head. We do 14 rounds of chemo (5 days a week, weekends off). Did it work? Scans showed cancer in other areas responding to chemo, not much change in the tumor in his head. Back to more aggressive chemo, lets try chemo that works well for brain tumors. Nope, nothing. What to do now, can't keep feeding Lukas pain meds all day. In comes the Neurosurgeon. We are told it's time for the "last resort option". Craniotomy. Cutting into my baby's head and trying to get the tumor out without hitting the major arteries it's attached to. 50/50 chance he'd make it through the surgery. Very high risk frontal lobe damage could be done, never mind the chances of that damage already having been done with radiation. We get sent home while all the doctors get their team ready and their game plan ready. We have to enjoy the last few days of having our Lukas with us. Whether he was alive or not, chances were he could come out a different baby. He comes home with us on such high doses of steroids to help keep the tumor from swelling, but the rest of his body is so swollen that he is miserable. We get the schedule for the surgery. The morning I take Lukas to the hospital with instructions to bath him with a special soap that will kill all the bacteria and germs that can't be on him while his head it standing wide open. That was the most somber day of my life. Not knowing what the future held, not wanting to think the worst but not being in control of my thoughts, my heart about to burst from my chest, hurting so bad and not being able to show it. We had to be happy, Theron couldn't understand what was going on. He was only 2. Kurt and I had been having the "what if" talks for the last four months, but now we were faced with them in a very real way. How do you say goodbye to your baby? How do you sign the consent form for what they wanted to do? How do you willingly hand your baby over to the nurse and walk away? How do you sit and wait for 10+ hours? How do you not break every time the nurse calls to give you and update knowing that any one of those calls could be the one you are dreading? We never expected to be told what we were when the docs were done with the surgery. They found no signs of live cancer. The tumor had grown in the bone and made it swell. That was the mass we kept fighting. Radiation had successfully annihilated any live cancer there was left. The "mass" was debulked, the pressure was taken off the optic nerve and skull base was fixed up as much as possible. Relief, answer to prayers, miracle, blessings beyond measure. No words could explain that feeling of knowing Lukas was still alive. Nothing else mattered, he was alive and now the waiting to see if he was still Lukas began. After we were thrown out of PICU 3 days after his surgery, we knew it was still our tenacious baby Lukas. 13 days after surgery we were sent home. The road got easier from there. We finished 4 more rounds of light chemo to kill off the rest of the cancer. July 3rd will forever be our Independence Day. We were told Lukas showed No Evidence of Disease. We won't hear "remission" any time soon, this was the next best thing. Next was antibody therapy to put his neurological disease (Opsoclonus Myoclonus Syndrome OMS) in remission. I sit here on the last day of his antibody therapy. The feelings are still fresh. Although Lukas made it this far, I've experienced loosing a baby to the disease, and have read about more than I can handle earning their wings as well. We are lucky and we know it. We don't take a day for granted that we could so easily have lost. Lukas is a vivacious, head strong, curious, verbal almost 3 year old. Yes I get frustrated with him, yes I loose my temper with his at times, but looking into his too old for a baby eyes, I see eternity and a love so strong I could never deny the blessing he is in my life. Handing Lukas off to the Neurosurgery Nurse I finally understood to some degree what Heavenly Father felt seeing His Son go off to His death. I got to glimpse life through His eyes. That has strengthened my faith so concretely. I know there is nothing we can't face and I know that I can handle whatever I am faced with. I have met some of the most amazing people on this journey, I've gotten closer to my husband, I love deeper, hurt harder and care more strongly than I did before. For that I'm thankful.