48/365 days of blogging.
You can read part 1 of the story here.
You can read part 2 of the story here.
You can read part 3 of the story here.
You can read part 4 of the story here.
After the initial shock wore off, the doctor’s words echoed in my mind…”If it comes back. there is little chance of beating it again.”
The oncologists at Children’s Mercy in Kansas City, were confidant that we would make another trip to Pittsburgh, PA, for another surgery to at least buy us some time until a new drug became available. We would find out only 2 short weeks later that it was not possible. The scans were once again sent to Dr. Janeka, and he called back with the devastating news…”We are unable to do surgery at this time because the carotid artery was now feeding the tumor.
So in March, once again, we started chemotherapy. She had just completed the 5th round of treatment, when a scan in July of 1993 revealed that they tumor had grown, almost tripling in size. You could now see the tumor when she had her mouth opened wide, in the back of her throat. In July…I made the decision to take her off therapy. It wasn’t a hard decision. I wanted her to have quality of life not quantity. It was clear to me that she wasn’t going to survive, and I wanted her to have a good time living out the rest of her life.
Two days after taking her off therapy, the Dream Factory called me at home and asked if there was a wish that Micah had. I said that I hadn’t even talked to her about it and that I would ask her. When I asked her what she wanted most out of life…she said “I only want two things mommy. I want to go to school, and I want to meet Barney the Dinosaur.” Really? Barney? Ok then. I relayed the message to the man on the phone and he replied, “Ok I will see what I can do.”
On the 22 of August, Micah started her first day of Kindergarten. She came home the first day and said to me, ‘Mom I went into school and during circle time when it came my time to share I just said that if you want to know why I don’t have any hair it is because I have cancer.” I totally expected the rest of the story to go something like ‘no one wanted to be my friend because I look different’. But instead she spent the next few hours telling me how fantastic it was and how she got to see all of her friends from head start and how fabulous it was. I cried. I was so happy for her. And so, so sad for myself.
The man from the Dream Factory called back and they found out that Barney was performing for the Senator’s and representative’s children in Washington DC at the Capitol building. We flew out on September 9th to Washington. The girls had a blast on the plane. They colored, and laughed, and looked out the window. For a while, we felt normal. We arrived at the hotel to find a room full of equipment. Suction machine, IV pump, oxygen…all pieces of equipment I as too familiar with, but were necessary in the life of my daughter.
The morning of the 10th, we arrived at the Capitol building. Barney came out on the stage and said hello to everyone and Micah was of course beaming from ear to ear. For the next 90 minutes, she smiled like I had never seen her smile before. She sang every song, of course she knew them by heart, and did every motion. She was, at that very moment, in her own little heaven. After the performance she got to go behind stage and spend about 2 hours “playing” with Barney. He talked, sang, danced, played, and devoted his entire time to making this little girl happy. We departed and headed back to the hotel to rest.
That night she stopped breathing several times. Her tumor would close off her airway. I had to reposition her so the tumor would allow room for air to pass into her lungs. The next day was filled with lots of sight-seeing. We saw the Smithsonian, rode the subway for the first time, went to the Washington monument, Lincolns Memorial, and the Veterans memorial, just to name a few.
On the 12th we got up early, ( I actually had not slept in 3 days), headed back to the airport for the flight home. On the flight out, we had a great set of flight attendants, but on the way home I had a very nervous group. They were concerned about her dying on the plane. She actually coded twice, and they were very panicky. I made it very clear to them that if she died on the plane I was willing to accept that. After all that was all we had left to wait for.
We arrived back in KC, and made the 2 hour trip back to Brookfield, our home town. I had said for months that I didn’t want her to die in some hospital room. I wanted her to die at home, with her family, where she could be comfortable. After having another long night of no sleep and monitors going off all night, I knew that is not what I wanted. My entire support system was in KC. The people who had cared for us and seen us through this entire ordeal. I made the phone call to Cathy, our nurse, and asked if the hospital was an option for us. She said, “We will make it an option.” So 2 hours later, on the 13th of September, we once again, and for the last time headed to Children’s Mercy.
One thing I forgot to point out was that if you had not been around Micah on a regular basis, you could not understand what she was saying. The tumor laid up against her vocal chords and made her speech hard to understand. That night we were in the play room at the hospital and she was coloring pictures for everyone she knew. Every time she would finish a picture she would have me write a name on it. All her nurses, her sister, grandma, grandpa, aunts, uncles, and cousins. I hadn’t slept in what seemed like an eternity, and I kept saying “Micah honey, I am tired, and mommy really wants to go to sleep. Can we finish your pictures in the morning?” She replied “We won’t be here tomorrow.” I figured she meant that we were going to wake up in the morning and go home like we had done so many times. The next morning I woke up to find that she had slipped into a coma of sorts, and her oxygen saturation had dropped from the mid 90’s to as low as 60 at times. Below 90 is considered concerning, and below 80 is brain damage levels. At 8:45, the Dr. came in to talk to me. I figured we were in for the long haul, and had a very long week ahead of us. The Dr. and I were talking over her bed when I felt a tug on my sleeve, over and over again. Without thinking I turned to her and said in a stern voice, “Micah, the doctor and I are trying to talk honey. Just a minute.” Then the Dr. and I looked at each other with wide open eyes and realized she was talking with perfect clarity. I turned to her and said “what is it honey.” She said…..
“Momma, He’s brighter than the streets of gold in heaven.”
I am convinced that my daughter was standing before God that very moment. At that very moment, she laid down her head, closed her eyes, and drew her last breath. I was very humbled to feel that I was there when this child of God took her first breath, and I was there when she took her last.
Three days later on the 17th of September, at 2 in the afternoon, we put her body in the ground. Over 500 people attended her visitation and funeral. When I think of the lives this little girl touched in the short 5 years she was on this earth, God definitely had a plan for her. I know the plan for me was to see through her death that it was the only thing that was truly going to make me follow God with my whole being. Mind you I remained very angry for over 10 years, (and that’s another blog in itself), but He knew that was the only thing that was going to make me turn my face to Him.
Tomorrow, I am going to end this series of blogs with a photo session of her life. So if you have been curious all this time as to what she looks like……..keep reading.