And, this was the beginning of our quest to help Adam. And, a long term relationship with Children’s Hospital. We began meeting with a series of Doctors…pediatricians, oncologists, surgeons, counselors, hematologists. I am so blessed that I had some medical knowledge…so we were not flying completely blind. And, I acquired much more knowledge than I ever wanted.
The oncologists came into Adam’s care as soon as he was out of ICU. And, this was a whole world I knew nothing about. They were following protocol from the Children’s Hospital of Philadelphia. Their research at that time indicated that removing the tumor was the only course of action in this type of cancer. Thus we began many long years of testing and waiting to see if the cancer returned. Many more 24=hour urine tests…it was not unusual to see a big carton of acid and urine in our refrigerator!
Blood work and x-rays of course…but the most horrendous and terrifying and hated was the bone marrow aspiration. The first one they did on him numbed me to the core. But for Adam, it was pure torture. I think they give some sedation now, but at the time…nothing. The first one they did, they laid him on his stomach, and proceeded to clean off a space at the base of his spine. Then they brought out the needle. Oh. My. Sweet. Lord. It was the biggest needle I had ever seen…big enough for the top to screw off and remove the core…leaving it hollow in the middle. Then the Dr. pressed the needle to his spine and leaned into it so as to push it into the center of his spine where the marrow was. This is nothing like a spinal tap where they go into the spaces between the bones…this was directly into the center of the bone. This was bad enough, but then they aspirated the marrow…and my baby screamed from a place that no one should ever have to go. And then it was over. He was clawing to get to me and I was so weak, I though I would pass out. The only bone marrow aspirations I had ever seen were done in surgery on a sedated patient. Never did I see anything like this in nursing school. I am shaking just typing this now…that horror will stay with me for ever. Don, being the good dad , wanted to be there for Adam and take some of the pressure off of me, said he would go with him for one of them. I told him no, that he really just should not, but he insisted. They picked him up off the floor after it was over and he never offered again. I would never have let any one else go, it was too gruesome. I later learned after doing some research on this procedure, that because there is such a vacuum in our bodies, when the marrow is aspirated through the needle, it feels as if everything inside of you is being sucked out through that tiny opening. Horrendous.
BUT…it brought GOOD NEWS! There was no evidence of cancer cells in the marrow! This was wonderful. We stayed in the hospital for about 2 weeks. I held up well, and was able to do everything that I needed to do for Adam. At this time in my life, I was suffering excruciating cluster migraine headaches that would sometimes last for 2-3 days. But, I did not have one the whole time we were there. We knew we were going home the next day, and that morning, I woke up with a severe migraine. I was in so much pain, I could not even walk…or even see straight. Don came to take us home, and I put Adam in the front seat with him. The Dr. gave me something to take, and I lay down in the backseat, and drifted in and out for the 4 hour trip home. I was not much better when I got home, and spent the next 2 days unable to get up. But, isn’t it amazing that I never had one while I was in the hospital? This is when family and friends took over and helped get us through these difficult days.
We began a routine of visits back to Children’s. At first weekly, then every 2 weeks, then monthly for a year, then every 2 months for another year. The next year found us going every 3 months, then every 6 months. And at over half of them they had to do another bone marrow aspiration. Can you imagine the horror of a little boy having to ride 4 hour in a car, knowing when he got there he was going to be tortured with this procedure? It mattered not how we tried to spin it, or help him forget it, or make promises for afterward. For the day before and the trip up, that was the only thing he focused on. We tried to not even let him know we were going until it was time to go, but he always could tell. My saint of a Mom would read, and sing, and hold, and tell stories, and tickle, and blow bubbles, and stand on her head….anything to keep him occupied as I drove. I could not have done it without her. God knew this and made it possible for her to be able to go with me and help me through this. She suffered as I suffered. And together, we tried to get Adam through this ordeal.
At the time Children’s was not the big, nice facility it is now. It was a small, old building, with old equipment, that never looked clean. I’m sure it was, but it didn’t feel clean, you know? I hated to go into the clinics where all the children were. Most of the parents were poor, and on welfare, and their children were always very dirty looking, as well as so sickly. The parents seemed so weary of it all…as if they could hardly go another step. Usually they had another 4 or 5 children in addition to the one with cancer. The waiting rooms were such depressing places. All the toys were broken, and the books were colored in or had the pages torn out as if no one had tried to control the children at all. It burdened my heart so. My Missions group at my church gathered books and toys several times and I would just take them with us and leave them there when we left. I still remember one little girl grabbing a book and running to her mother and saying,”Look, Mama, it’s a new one and it’s got all it’s words still inside!”. That little girl died about a year later. Now, Children’s is a beautiful facility, with all the latest equipment to treat little ones. We used to be bused over to UAB of St Vincents. I am so happy for the children that came after us.
One of the changes I tried to make during my years staying there, was to increase their awareness of the out of town patient and family. When I would stay for weeks at a time, I had no where to take a bath, we could not use the patients bath, no where to keep my clothes, no where to wash our clothes, no way to leave Adam and go to the store for supplies, etc. I met with hospital officials several times, and voiced my dissatisfaction from the point of view of a parent from out of town. I am happy to say that now there are rooms just for parent to shower, washers and dryers just for parents, sitters to stay if you need to leave, and lockers to store things you need to keep with you. Much improvement.
Adam was closely watched for 10 years. He had some precancerous cells come up on the kidney, they were removed, and never came back. He then had some to come up on the back of his neck…they were removed, never to return. All the surgery did much damage to his pancreas and he has had to have major surgery on it twice. But, he is well, he is happy, he is alive, he is married, he is a photographer, he is a Sunday school teacher, he is a Christian, he LOVES THE LORD, he is my boy…and I love him!
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