Super Z update:
The hum of the hospital. It’s become a familiar sound to me. Be here…be here. Don’t fear. He goes before me, before any information I receive He is already there. I don’t have to be afraid. I repeated a lot of these types of things and scriptures in my head as we checked into the pediatric cancer center in Houston. I wanted to be able to see what God had sent us there to see. And fear would only stand in my way. They took Zaynes vitals and 5 min. later we were called back to a small room with a sliding glass door. The boys played as the oncologist talked to us about the other types of chemo Zayne would need to be put on, however he told us he had arranged for us to meet with the pediatric neuro-surgeon at 2 that same afternoon. He also talked of getting blood tested and setting up an opthamology appointment the next day.
Alright Jess. Here we go. You got this. I tried to breathe and prepare myself for the next 2 days. We had a brief lunch and went back up to the pediatric floor. We were called back to another room with a sliding glass door. The neuro-surgeon introduce himself to us…all 5 of us. My brother-in-law ended up coming down with us per my request. He has a different set of ears and has my utmost trust. If Jake and I had to deal with emotional news he would catch the important pieces.
As the surgeon sat down and began I felt my guts tell me something. Breathe. “I just want you to know that if anybody was to come in here and ask about surgery on an optic glioma like this I would say absolutely not, in fact people come to me for second opinions about other surgeons who have said they can carefully extract a tumor like this and I have told them NOT to have surgery. There is too many risks, however in your sons case there is a cyst that has grown from this”…and he pulled up the first MRI where the cyst was barley visible, in fact he had to point out where it was. “to this”….the next slide he pulled up all you could focus on was a huge black hole in the middle of our kids head. My stomach rolled. It was huge. It was frighteningly huge. “Frankly as soon as they put these scans in front of me I knew your boy needed surgery. I know I can help you. If you wait too long on this we will be looking at vomiting and brain damage.” He went on to explain how the surgery would go. “I will make an incision from the top of this ear to the center of his forehead. We will take that part of the skull off and I will go into this open space right here”…as he pointed to a part of my childs head on the scan. “I will poke holes into the cyst and hope it drains. If it doesn’t we will attach a tube to the cyst that will be like a port of the outside of his temple and hope it will drain in a couple days. Now he is going to have a rough week ahead of him. It’s my job to tell you the truth. And he will be in the ICU for the first week. He will look black and blue, but his hair should cover the scar once it grows back. He is going to be in a lot of pain…I’m not gonna lie it will be a challenging week for him. We will do our best to control as much as we can.” After hearing all of that the questions were asked about how long until we should schedule it. “Certainly if this was an emergency I would be admitting him, but I wouldn’t wait more than a month.” I kept swallowing down my lunch I just had. The room started to spin. Everything got hot. I felt clamy. I kept blinking trying to re-focus. My imagination kicked into hyperdrive. I imagined kissing my beautiful baby boy and having to let go of his hand as he fell into a deep sleep. Then they would wheel him into another room. A room I wasn’t able to be in, I would have to wait in the waiting room clinging to his little pooh bear he sleeps with. Waiting. Wondering. Praying. Hoping. What if there were complications? What if it didn’t drain? What if I never got to see his bouncing frizzy hair, his smile, hear his laugh. My beautiful boy. My baby. I swallowed again. I was brought back to the room to ayden telling me he had to pee. I gladly grabbed his hand and led him to the bathroom. What about Ayden? What would Ayden do? How do you explain this to such a sensitive big brother? Both my boys. I felt as though my life flashed. Kawoosh! The toilet flushed. “Mom?” Ayden was looking up at me….”Are you ok?” I didn’t say anything. We went back into the room with the doctors. The more he talked the more I couldn’t breathe. And yet when I did, things seemed clear. It was like when I run….with every exhale I feel my body release but I find myself wanting to hold my breath. But it’s only for a second. I don’t know if that makes sense. I knew clarity was there I just had to get over the shock. We left the hospital and made our way back to the cute little hotel suite we found. My husband was amazing at letting me decompress. I asked my brother-in-law to go for a run with me. We trotted down to a cute little sidewalk by the river. I put my ear-buds in and told Michael that he could watch for traffic and weird people and I was gonna tune everything out and exhaust myself. He gave me his sympathetic smile that I have seen since I was 12. And we ran. I heard words like “You make me brave…It is well….I am changed….I am stronger.” I dove into my music and asked God to clear the noise and fears from my head. We finished and returned to the hotel. I made a couple important phone calls and headed back. My inlaws had made it in It was amazing to see them on such a rotten day!! And then I got to wrap my arms around my cousin Dan! I haven’t seen him in over a year and he has always done such a great job of taking care of me even though I am older. There were good things about the trip. Even with such devastating news…I kept trying to find the hidden rainbows.
So Jake and I have a lot of decisions to make. We are trusting God…trusting hope. I know in my spirit God has prepared me for this very moment, however my head, without strict boundaries is playing all the fears of that day. I am working very hard to stay in the moment. To simply think about the next steps. We are video conferencing with California tomorrow about his scans. Our first opinion was with Houston, we are hoping to get floods of calls tomorrow from every hospital Jake sent scans to. Maybe everyone will simply be a confirmation of Houston. However Jake and I feel, as crazy as it sounds, good about draining the cyst. We are looking at surgery dates around the end of January, beginning of Feb.
You all have been so faithful to us!! God is truly showing us the Army He has provided through you all I’m sorry this is so scattered….I will post more later.