45/365 days of blogging
You can read part 1 of the story here.
You can read part 2 of the story here.
As I sat there in that room, trying to allow it all to sink in, I desperately needed to hold my daughter. I was unable to do so for 2 more days. I got very angry at a nurse because every time I asked her if I could hold her she said “not now…I don’t have time.” I later found out that she was fighting her supervisors for an isolation room because she knew that Micah was going to start chemotherapy and that her blood counts and her ability to fight off infection was going to drop drastically. Her name was Virginia Owensby and she later became my one of my best friends. She was a great support system for me. I miss her terribly.
So the journey began. A journey of surgeries (21 over the next 18 weeks to be exact), tests, chemo and many procedures I never dreamed that I would have to deal with as a new parent. SHe ended up with a tracheostomy so she could breathe and a permanent catheter in her chest to receive medicines through and to draw blood out of. This prevented her from being stuck a million times, and for that I was grateful.
Over the next few weeks we had several ups and downs. For 18 weeks I never left the hospital. I ate, slept, showered, and stayed at my daughters bedside. Initially the tumor shrank to almost half its size. Then it grew a little. Then back down. Another surgery was scheduled to try to reduce the size of the tumor but there was an issue of the tumor being wrapped around her carotid artery. So they were only able to get a small portion of it out. The tumor was actually attached on top of the roof of her mouth and then hung down in her throat and grew into her neck. The doctors were very optimistic that she would beat this horrible disease.
She was 18 weeks old and finally I got to take her home. I was so excited! Well as soon as excited as I could be dragging a suction machine, oxygen machine, food pump, and an iv bag behind me everywhere I go. But I was glad to be going home. Before I could go home, however, I had to go through some pretty intense training sessions to learn how to take care of all the equipment that I was heading home with. When to suction her. When to change the IV bag. When to feed her, because she wasn’t on a bottle like “normal” little babies. She had to be fed through a feeding tube in her stomach. The truth was…I prayed for a child but what I got was a nursing degree! LOL But THIS was my new normal. Not the normal I had dreamed of with a baby but normal for us nonetheless. It was my life, and I was determined to make it a joyful time for me and my baby. I also went home with round the clock nursing. Again, strangers came into my home in 12 hour shifts to help care for her. Even though I was very grateful for the help, especially at night, all I really wanted was for everyone to go home…and let me just be a mommy. This wasn’t possible at the time because she required more exhausting care than I could give her.
Finally, when she was 10 months old, we were admitted into the hospital because she was uncontrollably vomiting. The doctors feared that her tumor was growing again and moving upward towards her brainstem and putting pressure on it causing her to projectile vomit. They performed a CT and came into the room and said that they were not able to see it clearly that they wanted to repeat it with contrast, which happens to be radioactive dye that they inject into my daughter’s body. So with the repeat scan underway, I sat patiently waiting. When the doctors came back into the room, they all had this very distressed look on their faces and said “We need to talk to you.” This was it. The moment I had waited for. Her tumor was growing again and she was going to die. I prepared myself to hear the bad news. What they said next both shocked and bewildered me. “We can find NO evidence of her ever having a tumor. No scar tissue from the 20+ surgeries that she had. No disfigurement of her air passages as there were before. NOTHING!” Well! That was certainly not what I expected. I started to cry and they all agreed and said “We can not explain it.” My reply was “I can explain it. God reached down and took it out of her body.” They all just sat there looking at me. All except Cathy Burke…she smiled at me and whispered an amen.
Exactly two weeks later, I found myself in the ICU for observation while they removed her tracheostomy. They had suspected for several weeks that she could breath ok without it but wanted to observe her in an observation room while removing it and for several hours after it was out. About 3 in the afternoon they removed it and for the first time I heard my child make noise that seemed to be music to my ears. You see, with a trach, no air passes the vocal chords so no sound comes from her voice. I can remember her being 6 weeks old and laying in ICU crying, tears just streaming down her cheeks and no sound coming out of her mouth. It was very heart breaking because I knew she was hurting and couldn’t even hear her much less help her.
At that point I decided to take her off therapy. I was tired of her being sick. Tired of fighting for her and with her. They doctors advised against it but I knew that my God of love had healed my daughter. I had prayed for so long for God to heal her, and He had done just that.
For 8 months we went in every month for a CT to make sure it hadn’t grown back. I really didn’t see the point, because she was healed. Nonetheless, every month, I went. Every month I went to CMH for them to tell me “All clear.” So on the 8th month, the doctors assured me if we got the all clear this time we could start coming every three months. I was so excited. I had usually become accustomed to hearing preliminary reports from the technician that when she remained silent, I just figured she was as tired of seeing us as we were of seeing her, so I didn’t think anything of it. The final report always came a week or so later. The next morning I was sitting in the living room changing her Hickman dressing when the phone rang. A familiar voice on the phone said “Jean, we need to talk. Can you come down to the hospital?” I think I remember dropping the phone and thinking “no…God…you healed her remember.”