Still waiting...

You know that adage, “No news is good news”…not always. Got up early Friday morning…didn’t sleep well the night before. After we had our quiet time and got ready for the day, we waited for Margarita to come. We were planning on going to the hospital to visit Kenneth and to take a couple of towels to Danelia.

I kept thinking about David, the little 2 year old roommate of Kenneth’s. I decided to make up a little bag of things for him and for his mother. I grabbed another box of crayons, a coloring book, a silly pair of the sunglasses, a little notebook, pen & pencil, a bar of soap wrapped in new washcloth, several toothbrushes…one that was just perfect for a little guy like David, a package of Kleenex and a roll of toilet paper. I also put in the prints of the pictures I had taken the day before…I knew that someday, those pictures would be very valuable to his all too soon to-be grief-stricken mama.

I had a similar hygiene bag made up for Danelia and we planned on stopping by Price Smart to get a couple of tubes of toothpaste and a stuffed bear for David. Just as we were getting ready to go, my phone rang and it was Danelia. The connection was bad but honestly, I think even if it would have been great, I would have had trouble understanding her. I do much better trying to figure out what someone is saying if I can watch their mouth, their facial expressions and their hands. The phone is not my friend when it comes to trying to translate.

I told Margarita I needed her to talk to Danelia and then explain to me what she was saying….which she did. I always get a bit tickled when I do this. Margarita doesn’t speak a word of English but I usually can understand most of what she’s trying to tell me…for some of the same reasons I mentioned above plus Margarita will try using different words until she hits upon something I understand. A conversation between the two of us is kind of like a Spanish version of Password (anyone remember that old TV game show?) and Charades combined. I'm sure it must be entertaining to watch 'cause we end up laughing at each other and at ourselves as it is.

It turned out that the hospital was dismissing Kenneth and Danelia wanted to know if we could take them home. She had too much to try to carry by herself and manage Kenneth, as well. Of course, we would take them home! We asked when they would be ready and the answer was “Now.” So, that ruled out the trip to Price Smart. We hurried around and stopped to get gas before heading on over to the hospital. When we arrived, they were sitting out under a tree. Kenneth spied our car as soon as we pulled in and was up and starting to walk toward us.
Jim stopped the car and I got out to go help Danelia carry her things. Of course, I had to stop first to get a good hug and kiss from Kenneth but then we moved on to the car. We loaded their things in to the car. Kenneth had his pillow and parked himself in the middle of the back seat where he could feel the air conditioner blowing on him.

I asked Danelia if she could do me a favor and run the bag for David and his mama back in to the hospital. I showed her the pictures so she would understand why I was so insistent about wanting the mother to get the bag. She smiled, nodding her head, and then without saying a word, grabbed the bag and headed back in to the hospital even though I know she was so anxious to leave there. She definitely understood the need for the things in the bag and the importance of the photos.

While waiting, I called Susanna. First to see if she had talked with the doctor – the answer to that was no and secondly, to tell her that Kenneth had been dismissed and that we were taking them home. I didn’t want her to decide to make an impromptu visit to Las Mascota and find that they weren’t there. She appreciated the update and told me she would try to call the doctor that afternoon. She was still at the hospital with Miss Ruby and was waiting for her to be moved from ICU to a regular room. She said she would let me know what she found out.

When Danelia returned, I asked her why the doctors were sending Kenneth home. She said that they told her that morning that they kept him for 48 hours for observation and that he could take the pills (the chemo pill, the antibiotic and the morphine) at home. She said that she thinks the doctors were basically saying that there wasn’t any point in keeping him at the hospital any longer. She did say that the doctor said the x-ray of the shoulder didn’t show any cancer in it. She asked why he was having such pain there and the doctor said he just shrugged his shoulders.

We needed to take them to Miguel’s mother’s house (which shares the same area as Miguel’s house) as Danelia didn’t have a key to her house and Arturo wouldn’t be home until 7:00 p.m. He didn’t know as yet that they were back in Tipitapa. When we got to the house, Lindsay was super excited to see her mother and Kenneth. She saw us behind them and we got to experience the next wave of her happiness. She has the best smile and her eyes just sparkle. She loved her sunglasses and she and Kenneth posed for their photo shoot!

When we walked in to the house, we were surprised at all the people who were there. Most of them didn’t even know Kenneth was on his way home! Elizabeth’s grandmother and her cousin were there visiting with Elizabeth, sitting outside in the shade in the two good plastic chairs. Miguel’s daughters, Esther and Sara were both there, playing out back along with a couple of cousins. Two of Miguel’s and Danelia’s brothers were there plus several other people drifted in and out and then, of course, Miguel and his mother were also there. It was quite a gathering and for awhile, almost a festive atmosphere.

A few weeks ago, Jim and I had bought an inexpensive child’s keyboard for Kenneth and Lindsay to share. We thought it would be something to keep Kenneth entertained without draining too much of his energy and still be something fun for both of them to have. We had originally planned on giving it to the kids for Christmas but with Kenneth’s health situation escalating as it has the last few weeks, we made the decision to give it to him early.

We had the keyboard in the back of the car and when Jim got it out and gave it to the kids, you should have seen their faces! I threw out the mandate that they had to share it and of course, they hollered “Si” in tandem as they disappeared with their newest wonder. They were so excited and could hardly wait to try it out, although as usually, Kenneth very carefully opened the box up while Lindsay pranced about impatiently. Miguel was as much of a kid as the little ones were and he could hardly wait to tickle the toy ivories himself but he had to wait while his brother checked it out. Finally, the real kids got to take it and they had a ball!

There was a small microphone that also went with the keyboard and the kids, especially Lindsay, were singing to their heart’s content…and at the top of their lungs. It was so much fun watching them play and pretend and just act like normal little kids. The only indication that things weren’t quite right was the ever-present mask that Kenneth is supposed to wear and usually does. But singing dictates that the mask come off! He was really enjoying himself. We were all sitting in the front room and every now and then, the solos became so loud that we couldn’t help but start laughing. It was just a fun time.

It wasn’t too awful long after the children had taken the keyboard out back that Kenneth came back in to the house. He quietly came over to my chair, put his arm around me and bent over to whisper, “Gracias” in my ear. This was totally without any adult prompting him to do so. His sweet humble spirit and his “attitude of gratitude” for even the smallest things, always touches me. I truly adore this child…

After the kids became immersed in their play activities out back, Esther had left and came back carrying two bottles of Coke for us…they know we won’t drink their water. We were both surprised and pleased as it was very hot and it felt good to drink something semi-cold. Elizabeth then brought a plate of food in for Jim and one for me. She had fixed some creamy rice and gave us each a small piece of chicken and ¼th of a tortilla. It’s so hard to take food when you realize that they are giving what they have and that when you take it, they will have even less. It’s also hard to understand that this is a culture where if we refused, it could be interpreted as being very rude and ungrateful. And so we ate…although no one else had anything. This was what they had to give to show their appreciation for our helping Danelia and Kenneth.

While we were eating, Danelia began talking about Kenneth’s situation. She asked me the question I had been dreading…she wondered if we had heard yet from Susanna about the drugs for Kenneth. I had to tell her “no”. The barest flicker of disappointment flitted across her face. She remained quite composed but even so, her eyes betrayed her and revealed the depth of that disappointment. I hate not being able to give her the answer she so desperately wants. I hate it for all the obvious reasons and for a few that are not quite so apparent.

She began telling me the story of Kenneth’s diagnosis. In May of 2007, he began complaining of a pain in his hip and in his upper leg. He would tire easily and began falling and tripping for no apparent reason. He also began complaining of headaches, became listless and would run a fever off and on. Danelia took him to the doctor and he told them it was nothing more than growing pains and to quit worrying about it, that it was normal. Danelia didn’t know why, but she didn’t feel that was correct. She tried to purse it but always was met with the same diagnosis.

In June of 2008, Kenneth’s condition worsened. She took him to the emergency room at the private hospital, Salud Integral, because she had heard it was such a good hospital. They would not treat Kenneth because they had no money. They told her she needed to go to the Baptist Hospital as that is where her husband’s company had insurance. I’m not sure which of these two diagnosed him with cancer, but one of them did. The Baptist Hospital said that their insurance wouldn’t cover the chemo-therapy that he needed and that they needed to go to La Mascota as they had a program funded by an American organization there which might cover Kenneth’s charges.

They checked again with Salud Integral and were told that it would be $1000 up front before they would even think about treating him. It might as well have been a million dollars to this family. They went to La Mascota. He was hospitalized there in August for a short period. After having several tests run over a period of time, they were finally given his diagnosis of a rare form of Hodgkin’s which acts very atypically and in Kenneth, was attacking the pelvis. They began a course of chemotherapy in February, 2009 and followed right on the heels of that with radiation.

The situation didn’t improve any as apparently, the hospital didn’t have the right type of chemo drugs and the radiation they used was too strong and caused some problems on the coverings of his organs. That has been the only treatment he has received. Which has led us up to this point…where Kenneth is now in Stage 4 of his cancer and no one seems too terribly interested in trying anything else or becoming too deeply involved. The consensus is that it’s over and basically, the doctors want Danelia to just accept that, quit bothering every one with it and take him home to die. I was sick when she told me that. She’s not ready to give up and I don’t blame her.

I reminded her that maybe the doctors don’t know any more than what they’ve said but that God does. And He’s still in control of all things. She knows. She agrees. She wants her son's cancer gone. Life is unbelievably difficult for all of them right now and trying to find the right thing to say is a challenge. I'm thankful that Danelia's faith is as strong as it is...a lesser person would be bitter and angry. Danelia is focused on what the next step should be.

She thanked me for continuing to try to help her and then told me she didn’t want to become a bother. I was incredulous. A bother??? Her nine year old son is in the middle of a fight for his life, literally, and she’s worried about being a bother! I assured her that I cared very much for Kenneth and Lindsay and that if I could be of help to them, I wanted to do so.

We continued to talk for about an hour, discussing various scenarios about Kenneth’s treatment and then it was time for us to leave. We said our good-byes and told her we would see her the following day at our English class and Bible study. She nodded her head okay and gave me a hug good-bye. She thanked me again for helping them. I told her it really was a privilege to be able to do so. I was serious. They have been such a blessing to get to know – the whole family.

That night around 10:30, I e-mailed Susanna, asking my now repetitive and I’m sure, quite annoying question, “Did you speak with the doctor today?” I knew she was probably still at the hospital but I didn’t want to risk missing her if I waited until the next morning. I also knew in my heart what the answer to the question most likely would be as I hadn't heard back from her. I don’t like this role and I don’t want to be perceived as the constant drip that drives someone crazy. But, I don’t want to come to the end of the road with Kenneth and think if I just would have tried one more time, then maybe… And so, I feel I’ve become the human version of the Chinese Water Torture and will probably continue to be so until we get the answer we’re looking for (which is simply the names of the chemo drugs that the specialist feels might be his last shot) or until we no longer have an opportunity or a reason to get that answer. I just can’t bear the thought of the latter option.

And so we wait, yet another night…