La Mascota...

What a crazy three days it has been. Last time I wrote I told you about Kenneth being hospitalized and trying to work logistics so I could get to the hospital to see him. Thursday morning, Jim got his things together and headed off to class while I waited for Susanna to call. I heard from her about 8:30 and she said that she had to meet with a doctor in regards to one of her friends, Miss Ruby, who was having some gall bladder problems and that she would be over after she had that met with him.

I had never been back to the wards of La Mascota so I wasn’t sure what Kenneth’s room was like. I began putting together a bag full of fun things for him to do if he felt up to it. I put in an empty Pringles can filled with things like car-shaped erasers, a fun pencil sharpener, a pair of scissors, a glue stick, a Buzz Lightyear pen, a couple of pencils, some plastic stencils, a ruler, etc. I also put in the bag a coloring book, some crayolas, some construction paper, some foamy sheets, some fun car/tractor type stickers, some Play-doh, a small notebook, a silly pair of sunglasses (and a pair for Lindsay , as well) etc. The last fun thing was a booklet I made with an assortment of mazes, Highlights hidden puzzles, Find-a-words, color-by-numbers and connect the dots. Putting it all together helped keep my mind’s doors shut to the dark thoughts that kept trying to sneak in.

I also got a call from Jim while waiting to hear from back from Susanna. He was at the grocery store here in Managua. It seemed as though they didn’t have school Thursday but no one had thought to let us know! That was a little frustrating. Especially since he was going to have to turn around and drive back out to Los Cedros in a few hours for a meeting about the house that the team from Cassville is going to be building in a week.

Jim came home and I continued to wait to hear from Susanna. She called and said that she was just getting in to talk to the doctor and that she would call me again when she was through. At about 10:15, she said she was on her way. We got to the hospital around 11:00. We went in the same way we had the week before when we had gone to meet them there for Kenneth’s testing. The guards at the barred gate inside the hospital were not going to let us both in. They said we could only go one person at a time. Susanna told them that I couldn’t speak Spanish and that I needed an interpreter. The one guard finally waved us on through.

We found Kenneth’s room in the second hall of the pediatric oncology ward. Danelia walked out the door in to the hallway just as we arrived. She acted very glad to see us. She told us they had just taken an x-ray of his shoulder as they thought the cancer was spreading in to the shoulder/neck area. She said they had put him on an antibiotic as they thought he had an infection of some sort and they were also giving him morphine through the IV. The doctor had also decided to give him some sort of chemo that is taken in pill form. The doctor didn’t feel as though it would help much but was willing to go ahead and give it a try. The good news was that the x-ray of the lungs showed that they were still clean. Danelia told us that the doctors said he would be there for 10-15 days.

We decided to go on in to see Kenneth. It was necessary to enter an outer door in to something almost like a small foyer and then we went through the second door to actually enter in the room. I was surprised to see how large his room was and how much cleaner it was than the hospital our team had worked in several years ago. There was a television up on wall, a sink area and a bathroom off the room. He had a little 2 year-old boy with his mother sharing the room with him. There was a giant glass window behind his bed which looks out in to the hallway. I’ll tell you about this little boy in a bit.

Kenneth immediately grinned when he saw us. Although he was lying down hooked up to his IV, he sat right up and gave a big hug. He gave Susanna her hug and his eyes went straight down to the bag I was carrying. As I was holding it up, I teased him a bit telling him I thought he might be bored but that I didn’t know he had a television so maybe he didn’t want the bag. He continued to smile and assured me he was bored. He carefully brought each item out and looked at it for a minute before laying it down and taking out the next thing.

Periodically, Kenneth would ask what something was or how to use it. Once he had it all figured out, he was in his own world, drawing pictures, playing with the stencils, peeling off stickers, etc. Every now and then, he would stop doing whatever he was doing to look at me and smile. I watched him trying to see if I could discern external signs of this terrible disease. He looked a little tired and I thought his face seemed a bit puffy but for the most part, he looked good and his spirits were certainly good. I’m guessing that’s what a morphine drip does for you… It was so puzzling to me and so hard for me to accept. That the doctors keep saying there’s nothing more they can do for the little boy who was very happily playing with his new toys.

It was hot in the room and Danelia went to get the nurse to come turn on the a/c which is mounted very high up on the wall. It can be turned on and off only by someone on the hospital staff and they make the decision as to when it’s necessary. Because there were two gringas sitting in the room, I guess they decided it was necessary. I was so thankful she turned it on but after a while, I realized it wasn’t putting out much in the way of cool air but seemed to be more for moving the hot air around. I thought that it was probably doing nothing more than creating a bunch of friction among the air molecules and that at any moment, we would all spontaneously combust! It was hot in there!

We all pretty much made small talk. I asked Danelia about the way the hospital works. Upon entering the hospital as a patient, each child receives one sheet for the mattress on their bed. If the mother wants a pillow or another sheet to cover them, she needs to bring it from home. The children are in their own clothes…there aren’t gowns for them. Danelia said that the mothers there had all put their money together and bought some bleach and some Pine-sol and cleaned their rooms themselves as they didn’t feel like the hospital was doing a good job. No wonder the room was so clean…I know how Danelia tries to keep her own home environment as clean as possible for Kenneth. And though they do have a bathroom there, if they want toilet paper, they need to bring their own – the same thing with towels and bar soap. She said there is a pila out back where they can wash their clothes but they need to bring their own soap ball.

I asked Danelia where she slept and where she ate. She said that she and Kenneth shared the twin hospital bed at night and that she hadn’t eaten since she arrived there, some 29 hours earlier. She said she wasn’t hungry. When I pressed her about meals and if we could bring food to her, she said that no one can bring food in to the hospital. If she would want to eat, she would have to go out across the street from the hospital to the little fritanga. Susanna said that it’s very expensive.

She said that Arturo sent some clothes up to them with someone who was coming to Tipitapa. The sweatshop where he works had told him the very next day after we had gone to get all the tests done the week before that he couldn’t take off any more work for doctor’s appointments or hospital visits for his son. Danelia was going to have to wait until Saturday before she could see him. They need him to keep that job, as bad of a place to work as it is, it’s a job. And there are a dozen people waiting to take his spot if he should lose that job.

Although Danelia doesn’t like the situation with Arturo’s work, she accepts it. She has no choice. She talked about how difficult it is to be there away from the rest of her family, especially her little girl, Lindsay. Her eyes became misty as she spoke about making such hard decisions and trying to explain them to a four year old.

I asked Danelia if I could talk to her for a minute and took her in to the foyer. I pressed some money in to her hand and told her I wanted her to get something to eat. She told me that it was

okay and that she wasn’t hungry. I told her that she had to stay strong and healthy so that she could take care of Kenneth. There were those sad eyes again, filling with those tears that are always just one tender moment away. She just nodded her head in agreement and bent her head down. She wiped her eyes and whispered, “Gracias”. I hugged her in response and we went back in to the room.

Susanna told her we would stay there with Kenneth if she wanted to go get something to eat, but she said she would do that later. Susanna told me that Danelia would consider it rude to leave us to go get something to eat.

I have found that some tend to see the poor as being “less than” because they have less “stuff” than others. Maybe we’ve just been blessed with the people we’ve met but the majority of them have displayed far better manners than most of the folks I’ve met in my life. Their lack of material things has certainly not diminished their show of hospitality and concern for their “guests”, regardless of the circumstances. Danelia is such a good example of this type of etiquette and genteel behavior.

While we were there, a doctor came in and walked over to look at Kenneth’s IV bags. He didn’t say a word to Kenneth or Danelia. He then walked over to the other little boy and did the same thing. Again, not a word was spoken. After he left, Danelia told us that he was a supervisor and was only checking to make sure the bags were right and that he never speaks to any of them. We all agreed he needed a refresher course in bedside manners.

Soon after, a nurse came in, wearing a mask and dressed in a traditional white nurse’s uniform. She asked a few questions, which I couldn’t understand due in part to the mask covering her face. She then injected a steroid in Kenneth’s IV but because the saline drip wasn’t working properly, it didn’t dilute and it began burning. Bless his heart, he began snapping his fingers on his right hand and bit down on his lip, but never once did he jerk away or cry out.

While the nurse was checking the IV, another doctor came in the room. He spoke to me and then to Susanna and then began his conversation with the nurse. He told her they needed to be

prepared as they were checking in a child who not only had leukemia, but also was diagnosed with the H1N1 virus. When he finished his directives, he turned and walked out, again, never even acknowledging the presence of the other four people in that room. The lack of simple and common respect is baffling and serves to perpetuate attitudes of superiority and inferiority and it seems as though everyone knows and accepts their parts but me. I don’t like these divisions and I don’t want to “fit” in either category. It’s an odd feeling floating between the two. I also find it ironic that Danelia, as one considered “inferior” to the physician, exhibited qualities and characteristics I consider far superior to the doctor who had obviously indulged in an ego overdose.

After the nurse walked off, Susanna messed with the placement of the tubing on Kenneth’s arm some and the saline began dripping again. I was so impressed with just how Kenneth seems to take everything in stride, all the poking, prodding and sticking…it’s always quietly and with great dignity. And it seems as his disease progresses, he becomes even more subdued. Maybe he’s too young to rail against the injustice of it all…maybe he’s too mature to see it that way. He’s quickly becoming my hero.

The nurse walked over to the little boy in the other bed to take his blood pressure. As soon as he saw her walking in his direction, he began to scream for his mother. The nurse held him down while she put the cuff on him and then the mother tried to soothe him as best she could, reaching around the nurse. It was heart-wrenching to hear that little guy crying like that. I wondered what he’s had to endure from the medical world to be so frightened of even the blood pressure cuff.

Later, the mother took the little boy in to the bathroom with her. We asked Danelia what was wrong with him. His arms and legs were very thin but his stomach was quite large and distended. His coloring was very yellow and he was pretty listless for the most part…although he was very interested in all of Kenneth’s goodies that I had brought. Danelia said that there was a large tumor attached to his liver and that the doctors had told the mother that morning that the tumor was inoperable and that they would probably be sending him home in a few days and that he wouldn’t get better. The matter-of-fact diagnosis seemed so flat when she said it. I realized she was facing a similar diagnosis for her own son. No wonder it was flat and without emotion. I would imagine that if she began to let the emotion take over, it would swallow her up. I just felt the sick feeling in the pit of my stomach began to grow and my chest tighten.

I hate this terrible disease, regardless of how it attacks or who. It not only tries to take life, it also tries to take hope. It separates families, it builds walls, it drains energies and laughter, it creates robots out of health care workers and prompts well-meaning friends and family to issue feeble and often empty platitudes in the hopes of somehow reassuring and at the same time, try to cover their own fear. Facing the fear of “what ifs” must be as frightening as facing the cancer.

I lost my father to cancer twenty-seven years ago. Twenty-seven years later, it still sparks the same response from the loved ones of those who battle it.

When the mother and her son returned to their bed, I smiled at him and showed him my camera. I asked him his name and although he told me, I couldn’t understand him. His mother told me his name was David. I then asked David how old he was. He wouldn’t look at me, keeping his eyes focused downward, but he did answer…again I didn’t understand him. Again, his mother told me. I don’t think it was the language barrier this time, I tend to think it was an age barrier…he’s 2…I’m not.

I took his picture and then showed it to him. A slow shy smile came across his face and he peeked up at me as I told him how handsome he was. I then took another picture of him and as I got ready to show it to him, he began smiling in anticipation. Upon seeing himself again, the smile expanded in to a full blown grin…and what a great grin he had. His mother laughed and hugged him…I think it must have been one of the few happy moments they had that day.

Danelia asked Susanna if she had heard back from the specialist yet. He had told us the week before that he would talk to the two head doctors there at La Mascota about trying another chemo treatment if they could get the medications. We had told him if we could get the names of

the necessary drugs that we would try to get them brought in from the States. This has become the thread of hope to which Danelia is clinging as far as the possibility of a successful treatment. Susanna told her that she hadn’t and that she would try to reach the doctor later that afternoon and ask him. I could see the disappointment in Danelia’s face…and I could feel it in my own spirit. She knows that the time is growing short for us to try to track down these meds in the U.S. in time for the team to bring down. It had been a week and nothing had materialized. I began to wonder if that’s not another one of the things cancer thrives on – well intentioned but unfulfilled promises.

The time passed by quickly and we needed to end our visit. Susanna was going to go spend the afternoon with her friend that was in the hospital and going to have gall bladder surgery. We said our good-byes to Kenneth which included a couple of really good hugs! Danelia walked out with us and I asked her if she needed me to bring anything to her as I planned on returning the following day. She hesitated and then asked if she could borrow a towel for her and Kenneth to use so that she could dry him off after bathing him. I told her I would bring it Friday morning.
She thanked us several times for coming. I was so glad that we had. It was good to see Kenneth doing so much better…even if it is because of the drug regimen he’s on. It was good to see him in such good spirits which brightened my own, considerably.

Later that night, I spoke with Susanna again. Miss Ruby had her gall bladder surgery and had done fine, although they were going to keep her in ICU for the night as a precaution. Susanna was going to stay the night there along with Michael and Elizabeth Buzbee, other friends of Miss Ruby’s. I hated to bother Susanna again about this as I knew she was having her own issues to take care of where she was but I was hoping that maybe she had heard from the doctor. She had not but said she would try to call him right then. We didn’t hear back that night but were hoping to hear good news the following morning…