My memories of the time between when Mom was admitted and when she left for Houston are jumbled. I know with Mom gone, running the house largely fell to me. I would get me (age 8), my sister (age 3-4) and my Dad up in the mornings and make breakfast. I remember having burns on my thighs from wearing my night shirt while cooking bacon in the morning and the grease would pop and splatter me. I remember learning how to do laundry and having to have a step stool so I could climb on top of the washing machine so that I could reach the soap. I remember sitting on the sofa attempting to hand-sew a hole in my underwear closed.
Through out the summer we spent a lot of time with various family members and random people from our church who volunteered to look after my sister and I for a day. That was probably the hardest. Every house had different rules. One house I sat until I was near starved b/c I’d been taught it wasn’t polite to ask people for food. When the woman found out she was like “oh honey you just have to speak up or better yet go serve yourself!” Then the next house I got in trouble for trying to do just that. Some houses they’d tell me I could eat anything I wanted and others I was told that beggars can’t be choosers and I should eat ONLY what they offered me and eat every last bit.
Then there was the boredom. Some people had kids who would share their toys. Others did not – either the kids were grown or the kids wouldn’t share. Or they’d want to watch a movie I wasn’t interested in or what not. The sweetest woman, I have no idea what her name was or I’d write her a big fat thank you note all these years later, discovered I liked to draw and she bought me a BIG thick fat loony tunes coloring book and a box of 64 crayons. I swear that book saved my life with all those days of house hopping.
I also discovered reading. But mostly I discovered how to fake reading…. Nobody would tell me exactly what was up with my Mom. They made this big show of how Momma would do 6 weeks of chemo therapy (counted it off on the calendar with us and everything) and then she’d be all better and could come home. That was a lie. I don’t know if it was intentional or just misinformed but either way when the info changed they didn’t tell me directly.
And so I’d pretend to read a book and listen while Daddy talked on the phone. I even remember him saying “Oh nah, its okay, she’s reading a book. She’s not listening” and he would talk about chemotherapy and radiation and bone marrow transplants. I didn’t understand what those words were exactly but I caught the gist of it. Daddy seemed to underestimate my vocabulary and comprehension back then. Where as my Mom always just talked to me like I was an adult and I’d just have to stop her occasionally to have her define things.
It was funny, at one point they put me in class with one other little boy and some type of teacher there at the hospital where she tried to give us the “My Mommy has Cancer” after school special or some such thing. I was so excited to finally have a person to ask all my questions to. I immediately started asking about chemo etc and she about freaked. I think she would have put her hands over the ears of the other kid if she could.
As it was class was HASTILY broken up – me with one teacher where I asked all my questions and the little boy went with some other person to get the kiddie version.
Our days went something like this: we’d get dropped of with whoever was watching us that day, Dad would go to work, then he’d come and pick us up, we’d go visit Mom in the hospital. My sister and I would wear masks b/c the docs explained that we had cooties and would make Momma sick (oddly enough she never once got sick from my sister and I but she caught a dozen things from Dad). And then later in the evening we’d head back home and I’d lay across the foot of my Dad’s bed pretending to read Black Beauty while he talked on the phone.
In retrospect, Momma mostly looked good at the time. I remember she lost some weight and when the chemo got started a friend of hers who was a beautician came the hospital and gave her a hair cut. My Mom had had the 80′s big curly shoulder length hair and her friend cut it off to a ultra short pixie cut. They explained that this was better since the chemo would probably make her hair fall out and it wouldn’t make such a mess this way. I remember being shocked but liking it.
I missed being able to give my Momma kisses but at least we could scramble up into her bed and cuddle with her and get hugs. We’d bring her pictures we’d drawn to decorate her hospital room. And we always loved to see when other people would bring her balloons. She couldn’t have flowers so if somebody forgot and sent her them they’d hold them out at the nurses station and we’d take them home with us at the end of the night. I liked that part because I loved fresh flowers but I sure wished I could share them with Mommy.
Then they began to talk in earnest of transplants. Momma needed a donor and a hospital. At the time there were only 3 hospitals in the country that did the transplant – one in Tucson, one in Seattle and one in Houston. At the time we lived in Phoenix and so Daddy asked the doctor, “Well, Tucson is closest… whats the difference between the them?” The doctor replied that, “Well, right now, Tucson has about a 13% success rate, Seattle is running 20% and Houston is doing 50%”. My Dad stared at him for a minute and went “Ya know Houston sounds GREAT to me.”
I remember the search for a donor. They started by testing all of my Mom’s brothers. Adam and Sam went first and neither was a match. They’d wanted to avoid putting Uncle Mike through the stress because he had a heart condition, but he agreed to be tested. By this point, I’d caught on that if Mommy didn’t have a bone marrow transplant that it was going to be bad. I wanted them to test me. I didn’t care if it hurt. I was willing to do anything to save my Mommy.
Momma was dead set against my even being tested. She said it hurt too much and she didn’t want me to go through that. I was set and ready to be stubborn and fight long and hard for this if I had to but thankfully it turned out my Uncle Mike was a match.
So now we had a donor and a hospital there was just one more major roadblock: money. The insurance company was refusing to pay for treatment. There was some sort of government assistance available but they didn’t want to pay either and MD Anderson wouldn’t let us come unless they got a down payment that was either 30k or 3k I don’t remember. I was 8 at the time but I remember it was wayyyy more money than we had. My parents had always been on the verge of broke though they worked hard to provide for us but the medical bills quickly piled up and wiped out whatever was left of their finances.
And so, I don’t know who all organized it but they had a big benefit dinner to try to raise money for my Mom. A local grocery store donated steaks, family friends provided entertainment, and Kodak (my Dad was a professional photographer at the time) donated door prizes. I know the tickets were like 100 bucks each. We raised a ton of money with that dinner (I can’t remember exactly how much) but it was still far short (less than half if I recall) of what we needed.
Unbeknownst to me at the time, my father’s childhood best friend, an attorney, sent a letter to the hospital and the government and explained that if they continued to delay my mother’s treatment while they quibbled over the money and she died that we would sue them for everything that the mother of two small children was worth.
The day after the benefit dinner, we got word from the hospital that they’d let us come after all. We only needed to pay less than half the previous amount in advance. I don’t remember the numbers but I remember it was almost the exact amount we’d raised at the dinner the night before. It was a miracle.
A small army of sisters from church came to the house and packed up everything. My sister and I went to live with my grandparents while Mom and Dad went to Houston.
The day they left we went to the hospital early. Mom was in street clothes for the first time in months. They wheeled her in a wheel chair out of the hospital and to a waiting limo. I was so excited, I’d never been in a limo before. Daddy explained that taxis had too many cooties and they wanted all of us to be able to ride together so they’d gotten a limo. I remember my Mom and Dad piling into a little leer jet complete with a small medical team to monitor Mom through out the trip.
I hugged my Mother goodbye for what I was scared might be the last time. I had know idea if I would ever see her again. And then I stood next to my Grandma with her arms wrapped around me and I sobbed my little heart out as I watched the plane back up and take off.