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…

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…

Hope for tomorrow...

Typically, when I’m nervous or upset, I want to go find something to eat. Unfortunately, that’s never a carrot stick or lettuce leaf. Normally, it wouldn’t matter if I had already eaten dinner, if I'm at a certain level of agitation, I will eat. But tonight, my stomach is too unsettled to put anything more on it other than ice water. Kenneth’s in the hospital.

Danelia called late this afternoon and all I understood at first was that they had just brought him in. Her voice was shaky and I asked her what was wrong. She said he had a fever and was in a lot of pain and the doctor was coming to see him and she wanted me to know. I told her I was going to have Susanna call her so I could understand everything. She said okay and hung up.

I called Susanna and even though she was in the middle of taking care of her own things, she called Danelia for me and then called me right back. It seems as though he began complaining again of the pain and this time, in addition to the pain in his leg and his arm, he complained of pain in his neck. His fever was high and she couldn’t get him to eat or drink anything and that he was losing weight. She knew she needed to get him back to the hospital. The doctor had come in briefly and said he was going to put Kenneth on an IV morphine to help with the pain. Danelia told Susanna she wanted prayer.

I asked Susanna what she thought. She said she honestly didn’t know, that it did seem like he had deteriorated very quickly but that maybe spending a few days in the hospital would help him get some strength back. She said it’s too hard to guess. Having just lost her grandfather to cancer less than two years ago, she is very compassionate to the situation. Her voice softened and she told me it could be right away or it could be months yet that she just didn’t know without talking to the doctor. I was okay until she said she was sorry. In my own struggles, I can deal with facts and I can deal with hard situations, but I don’t handle tenderness and compassion well…it takes me straight to tears.

Normally, we would have jumped in the car and headed over to the hospital but nothing’s been normal here for the last week or so. This morning, there had been a young man at the gate this morning, when Jim was gone, asking Margarita for trash to go through but when I went to the door, he left in a hurry. It was odd but I didn’t think that much of it and just told Jim about it when he got home. Then right before Margarita left this afternoon, she told us there were two young men cutting wood across the road but that they were also watching our house. She told us to keep careful watch on the wall and the house. We thanked her and told her we would. Whether they were actually watching our home or whether Margarita was just jumpy due to last week’s incident next door, I don’t know but I do know I was starting to get that uneasy feeling. So, we decided I would stay home and Jim would go to get copies made.

All of a sudden, we heard Pixie barking at the gate. Jim went to see what was going on. There were a group of teenage girls and young women looking through the gate and reaching in. They had already charmed Pixie…fine guard dog. They were talking among themselves and when they realized Jim was walking up to the gate, they asked him for water. He told them no and they continued to stand there talking to each other for a little bit. He brought Pixie back to the house. The uneasiness grew.

Jim said he wasn’t comfortable leaving the house and I wasn’t comfortable with him leaving. It was right after that when the phone call came from Danelia. After a lot of discussion, we decided that Jim would revamp his lesson for his class so that he didn’t need to make copies. We also decided that he would go to school tomorrow as he also has a meeting in Los Cedros immediately following his classes and that I would call Susanna and see if she would take me to the hospital in the morning. Of course, she said she would. I don’t like missing my classes with the kids but I know that I need to be at the hospital. It’s not like I can really do anything or change the situation but I still feel that’s where I should be. Besides, I really want to just go love on Kenneth for a little bit and give Danelia the hug I know she so desperately needs right now. Freddy is usually here by 8:00 a.m. so I know the house will be okay with him here and I also know he will stay until Jim or I get home.

So, after working all this out, I then called Danelia and told her I would be there tomorrow morning. She said okay and began to cry. I asked her if she needed anything and she said prayer. I told her we were.

So this is where we’re at tonight. I’ve read more on his disease, still trying to find a way out of this. All I find are things that frustrate me…that in the U.S., Hodgkin’s Lymphoma is one of the most curable cancers; that in his age bracket, there is a 95.4% survival rate of 5 years or longer; that there are new advances every day improving both diagnosis and treatments that are improving both the length and quality of life in these patients. That’s such good news but it doesn’t make much difference in a country where there are still oxen pulling carts loaded with firewood down the main highway in the capital city.

I’m tired. Susanna called just a little bit ago to touch base about going to the hospital tomorrow. She’s tired, too. The thing about tomorrow is it’s a day that hasn’t come yet. It can be a day to dread or a day of promise. Oh, how I want it to be a day of promise…

Strength for today and bright hope for tomorrow...

Great is Thy faithfulness! Great is Thy faithfulness!

Morning by morning new mercies I see.

All I have needed Thy hand hath provided;

Great is Thy faithfulness, Lord, unto me!

Because of the LORD's great love we are not consumed,

for His compassions never fail.

They are new every morning;

great is Your faithfulness.

Lamentations 3:22-23

Tender mercies...

The last few days have kept our e-mail accounts hoppin'. I have received such wonderful words of encouragment and assurance that there are many who are praying for Kenneth and for his healing. Today, I was sharing about one of those in an e-mail with a very special friend of ours in Arizona. Jim almost always reads what comes in and often, what goes out. He urged me to put this part of that e-mail on the blog. He thought it did a good job of explaining how we feel about what we hope for with Kenneth. So, here is that explanation...

"Thank you so much for praying for Kenneth. He's such a special little boy to us. I wish you could know him for yourself. He has the sweetest spirit - you can tell Jesus has filled his heart with love. Someone wrote me this morning about him, and in kindness, reminded me that God is still in control. I told them that I know God is in control and that accepting that truth is not the issue...the issue is how painful it is sometimes to be obedient to do what He's called us to do where He's called us to do it and with whom He's called us to do it.

Falling madly in love with a 9 year-old little boy who has been labeled as "terminal" was never something I thought I would be dealing with when I unpacked our suitcases in April of 2008. My selfish nature wants to protect my heart from loss and pain and the nature of Christ in me wants this child healed...back to my selfish nature...I want him physically healed in this life. It remains to be seen what God's will is. And so, we pray and we ask others to pray, asking God to indulge all of us here and to do a divine healing on this sweet little guy. If that answer is no, that will not change God nor how I feel about Him...it will change the timeline and the location of where I will receive my hugs from Kenneth. And it will give me another thing to ask God to do for me and that will be to heal my broken heart."

I do want to thank all of you who are doing exactly what we asked you to do and that is to pray for Kenneth and his family, to pray for healing and to ask others to do the same. Jim and I were talking about this last night...yet again. Honestly, much of our focus is on Kenneth right now. I told him I am so ashamed for the times I've received prayer requests for situations with people I've never met or heard of and more often than I care to admit, although I've prayed for them... it's not been with the fervency or depth which I know the person asking would have wanted...or needed.

I confess that some times, they were names whose connection to me was only through the person who had asked me to pray. I didn't know what they looked like, what they liked to do in their spare time, what their favorite pet was as a child, if they had a passion for chocolate, how they felt about Mozart and Monet, if they laughed heartily or if they chuckled...and rarely, did I really give serious, devoted time to thinking about those who loved them desperately and those they loved. They were names on my list with situations that I wanted to check off. I like short lists.

What a terrible intercessor I have been at times. And now...God is teaching me in the most effective way to date, just how important those prayer requests have been. Obviously, some of those weren't to me, but they sure were to those who were asking. I'm more than ashamed...I'm sick at heart...I've always been the one to talk about the importance of intercessory prayer and I believe it wholeheartedly...I'm afraid I've just been terribly discriminating (notice I didn't say discerning) about in whom or what I was willing to invest my prayer time. Wow...if there's ever any doubt about God's mercy, let me tell you I have a newfound awareness of the fact that I can't even begin to grasp the extent or the depth of such - although it is so obvious in His patience and forgiveness of such a willful child as myself.

It still amazes me how God speaks by bringing scripture to my mind to teach and rebuke me when I've not honored Him as I should. I had to look this one up to get it exactly right and I chose the New Living Translation as it pretty much cuts to the chase with me about this subject, "My dear brothers and sisters, how can you claim to have faith in our glorious Lord Jesus Christ if you favor some people over others?" James 2:1 This calls for more than a flippant "ouch"...this calls for repentance.

Please forgive me, Lord, for my selfish nature and my all-too often, casual and careless attitude in approaching Your throne of grace and mercy and tossing an "obligatory" prayer request at your feet. I am ashamed to the very marrow of my bones for my show of disrespect and dishonor to You and to Your children.

I am learning more and more that there is nothing that supercedes in value or investment the treasure of time that we spend in communion with our Creator and our Lord. How easily we can become bankrupt in this area.

And now, I will tell you that I truly do not want this to be just a momentary pang of regret for not being the intercessor God has called me to be. Whether you pray for Kenneth or not is between you and God and it's not something I need to know about. Whether I pray for you, your loved one, or a situation of concern is something I know God is going to keep before me in the future. He brings awareness of my shortcomings to me in order for change to result. I am now fully aware of this particular one. I am also reminded how God chastens those He loves and right now, there is no doubt that I am loved. Praise be to God who does this as only He can do.

Yesterday...

Yesterday was our usual day for Tipitapa. We had a small class this time…only about 16 or so. It’s a holiday weekend and many of the students had family activities going on. Monday and Tuesday are major holidays here. I won’t go in to the lengthy explanation, but briefly, the Battle of San Jacinto is celebrated in remembrance of a victorious battle which took place on that same date in 1856 where a group of Nicaraguans defeated some American and European mercenaries who were funded by a man by the name of William Walker, who had declared himself president of Nicaragua on July 12, 1856. This is actually some pretty interesting historical reading if you ever get a notion to Google it and read up on it. It explains a lot of the generational distrust of Americans as the story of this battle is still taught with great fervency in the schools.

The odd thing is, I had never even heard of him until we moved here but everyone here knows his name and the immediate association is that he was from the United States and somehow we need to acknowledge our “defeat”. Whatever… I tend to agree with the Nicas after reading about Walker. He was pretty much a plague to the Central American nations and ended up being executed in Honduras at the age of 36. Wikipedia describes him as “an American Filibuster or pirate”. I think he earned his bad guy reputation…just wish he had not been from the U.S.

On the heels of San Jacinto Day, the country celebrates its Independence Day…although not their independence from us, but from Spain on September 17, 1821. There are lots of parties, drinking, fireworks, etc. Since the holidays fall on a Monday and Tuesday this year, many folks are enjoying an extended weekend which simply lengthens the time for partying. The schools are out and most businesses are closed these days so it’s a good day to just stay home and lay low…you never know who may want to bring up the subject of William Walker!

On the way to Tipitapa, Jim and I stopped and picked up some groceries for Kenneth’s family. Life is always a struggle for them but it’s even greater right now. I was hoping to also be able to take them some good news from the oncologist we saw on Thursday, but due to the holidays, he won’t be able to talk to them until at least mid-week next week. He had called Susanna to tell her that and also said that he had consulted with a pediatric specialist who felt as though Kenneth was already addicted to the morphine. I don’t think any of us were surprised by that…he’s been on it for some time now.

We had another great English class. The students are getting much better with their pronunciation. I have realized that quite a few of these students do not read well and don’t understand phonics at all, even though they speak one of the most phonetic languages there is. There are a handful who are really motivated to learn and I think the majority are there for the novelty of taking free English classes. It gives them a good excuse to get out and socialize with one another and they enjoy the break in their day. That’s okay ‘cause they all end up staying for Jim’s Bible study and that’s really why we’re there.

After English class, I asked Danelia if I could talk with her privately. She said yes and so during Jim’s class, we took two plastic chairs outside the church, found some shade between the buildings and sat down. I asked her how Kenneth was. Her eyes teared up a little and she told me that he had not slept well the night before, complaining of the pain in his leg. She said that he was weak and unsteady when he walked. She was afraid that they were going to have to go back to the hospital if he didn’t get better.

One of the things I wanted to talk to her about was helping her with repaying a loan that she had taken out while Kenneth was in the hospital. She had let it slip when she was talking with Susanna and me a few days earlier. We touched on it briefly but she was too embarrassed to discuss it with us in detail. We knew the basics but not the whole story. I wanted to know what was going on as the stress from this loan was obviously pushing her to a breaking point. Susanna and I both are concerned about Danelia’s health…she is an emotional wreck and not without good cause. She’s been told her son will soon die and that there’s not anything anyone can do to change that. I decided to wait that day until Jim and I had a chance to discuss it and pray about it. I didn’t want to approach Danelia and give her any false hopes regarding the loan. She’s had enough disappointment recently to last a lifetime.

Jim, Susanna and I discussed the situation on the way home last Thursday. Susanna is usually a bit skeptical to such situations as she’s well-versed with all the pleas for help, some are legitimate, many are not. She’s also very protective of us if she thinks someone is trying to take advantage of us. I’ve told her many times that it’s not our money, that it’s God’s and that if someone has not been honest with us, that it’s His score to settle. We definitely want to be good stewards but by the same token, we don’t want to be so critically analytical and distrustful of every encounter that we fail to show God’s mercy out of fear and a sense of protecting our own interests. She understands but I am also thankful that she will tell us if she thinks we’re in over our heads. I was relieved to hear that she also felt Danelia and her story were quite genuine,
tragically so.

Later, when we were home alone, Jim and I discussed the situation further. We agreed to pray about it and see later if we felt as though God was leading us in any particular direction. When we discussed it again on Saturday morning, there was no doubt what we were going to do and we were very much at peace about it.

Yesterday, sitting in the shade, I told Danelia I wanted to talk to her about something and I didn’t want to embarrass her or offend her. She looked at me with a very puzzled look on her face. I told her I wanted to talk to her about the loan she had mentioned the other day. She looked horrified and then looking down, I saw the tears quietly begin to fall. She told me in a very subdued voice that she was terribly embarrassed that she had let the words out of her mouth when she was talking to Susanna and me. I assured her I hadn’t said anything to Miguel or her family.

She asked me what I wanted to know and I told her to start at the beginning and tell me everything. I knew it was going to be a lengthy and painful story as she was also working out her own grief and anger at the situation with Kenneth intermingled with dealing with her own emotions about this loan looming over her head. As she talked, I could feel the anger beginning to rise within me.

Danelia used to be a school teacher but when Kenneth became so ill last summer (winter, our time), she had to quit. When she was working, her income added to her husband’s enabled them to take care of their basic needs. But with Danelia no longer working, they were falling further and further behind with their bills.

Even though they get free medical care at La Mascota Hospital, they only get the medicines free if the hospital pharmacy happens to have them. Many times they do not. And, if the doctor decides to give him an injection for pain, the family has to pay for that. The injections run about 240 cord each (approximately $12 ). That sounds pretty reasonable, doesn’t it? It’s not when you’re only bringing in $117 a month and you’re struggling as it is. They also have to pay for transportation back and forth to the hospital and although the hour long bus ride (one way) costs only about $2.50 round trip for she and the kids to and from Managua, that quickly adds up and eats up their “expendable” income…I hope you know that was said tongue-in-cheek. There is no such thing for this family.

From the time Kenneth was first diagnosed, Danelia has tried to feed Kenneth the diet the doctors prescribed…again, an impossibility with their income. Chicken costs $1.00 per pound at the open air market, with rice and beans each costing just under 50 cents a pound. We can’t imagine what it’s like to live off mainly rice and beans with little else thrown in for variety…but they know all too well. Chicken or fish is a rare treat. Beef hardly ever makes it to their kitchen. Bananas are about the only fresh fruit they can afford to buy and if they buy a vegetable, it’s usually ayote.

Out of desperation and without her husband’s knowledge, when Kenneth was hospitalized in February, Danelia went to a woman she knew to get a loan. The woman agreed and told her she would loan her the money at 20% interest. Danelia felt she had no other alternative and would have agreed to anything at that point. There was no written contract, simply a woman begging for help and another woman playing the role of an opportunistic benefactor.
Danelia has been struggling to repay the loan a little at a time and much to her credit, had managed to pay off about 1/3 of the principle. But now, the woman has called in the rest of the loan and gave Danelia until the end of the month to pay it all off. If that weren’t stressful enough for Danelia, the woman told her that because she hadn’t paid it off earlier that she now owed almost double the amount. Danelia tried to explain to her that as Kenneth’s condition worsens, their expenses are continuing to go up. The woman was not sympathetic. She told Danelia that if she didn’t get all her money by the month’s end, that she would go the television and the radio and announce what bad character Danelia had. That was the last straw for this poor woman.

My first question was if the woman was a Christian. Danelia shook her head “no”. She was just the only person she knew who would have money to loan. I asked her if there was any kind of written contract. Again, a shake of the head. When I asked her what would happen if she didn’t pay the full amount the woman was now demanding by the end of the month and Danelia told me of the threat, I swear I could feel my blood pressure about to top out.

Now let me explain that threat business to you. To us, that sounds like a hollow threat, even a ludicrous one. But here, there is a radio station where you can say whatever it is you want to say about anyone. No one cares whether the allegations are true or not and no one does any kind of investigation on those who are calling in or those who are being called about. There is also the same type of thing on one of the television stations. In theory, it’s to alert people to disreputable businesses or illegal practices. It’s actually an outlet for a lot of venom. Danelia was terrified that this woman was going to follow through with her treat.

Danelia had nowhere to turn for help - she had not told anyone about this loan as she was embarrassed and her family and church had already helped all they could. The pressure was mounting, the time was running short so she finally told Arturo. He was furious…he was upset with Danelia for doing this behind his back, angry with himself for not being able to make enough money for the family, angrier still with the cancer that is taking his son away from him day by day and angriest with this unconscionable skirt-wearing loathsome loan shark…okay…that’s my description of that woman. I feel it’s accurate.

Arturo didn’t get any further with the woman, than did Danelia. She was holding firm. She was not at all compassionate regarding their circumstances and did not show any interest at all in Kenneth’s condition. She wants her money…all of it, including the inflated interest and the horrendous “penalty” amount. Arturo became very angry with her and told her what an awful human being she is to charge such an outlandish interest amount on a loan and then to tack on the penalty. He tried to explain to her that if they were having trouble repaying the original loan, how did she expect them to pay what is now more than double what they owed. Her response was that wasn’t her problem, that she wanted her money and she wanted it in full by the end of the month or she was going to the media and tell them that the Gonzalez family are terrible people who do not honor their word or pay their debts.

I took a deep breath and took hold of her hand. Jim and I had already discussed most of this so I felt confident in what I was about to do. I told her that we thought we could help her with the loan situation. I told her that if the time came that they could start to pay it back a little at a time, then that would be wonderful, but that was not something we wanted her to worry about right now. I told her that there would be no interest and that we didn’t want this hanging over her head as another worry.

I said that her focus needed to be on Kenneth and Lindsay right now, especially now. Jim and I feel that if we could help alleviate this stress from her life, then she might have more strength to give in the coming days… as it’s only going to become more difficult given Kenneth’s situation. I also told her that since she had verbally agreed to the woman asking the 20% interest, that I felt like it had to be paid, exorbitant figure that it was, but that in no uncertain terms did I feel that the “penalty” figure should be paid. That was not part of their original agreement and it was nothing more than a form of extortion.

I told her that I had the money on me and that I would give it to her and Arturo when we took her home so they could go get that woman paid off. I also told her to tell the woman that what she was getting was what they had originally agreed upon and that there would be not be any more money coming. I told Danelia if the woman went to the television station or the radio station, she would be the one ending up looking bad considering how she was trying to get more money than to which she was entitled and not to worry what she did or said.

Watching Danelia at that moment was like watching a dam break in slow motion. She almost doubled over sobbing and it was as though all the pent-up emotion for the last year, found an outlet. There was not only a flood of tears, there were torrents of words pouring out of her mouth. She had hold of my hands and kept squeezing them and rubbing them. Even though she started talking a mile a minute and I couldn’t even begin to translate her rapid-fire words, I completely understood her heart and her face. You see gratitude a lot here on the faces of those you help. In the States, we tend to be polite and that’s how we issue our words of appreciation…politely. We are taught to thank other folks for the nice things they do for us…here, it is pure, unadulterated, deeply heart-felt gratitude that comes pouring out from those held captive by their circumstances and situations. Danelia was a prime example of that. To her, there weren’t enough words of thanks and there wasn’t enough time to tell me what this meant to her and her family. It was the right thing to do…

When we took Danelia home, I saw Kenneth’s drawn little face peeking out the window. As soon as we stopped, Lindsay came flying out the door to give us hugs. Jim stood guard over the open back door of the 4-Runner while Lindsay and I carried the groceries in that Jim and I had bought earlier in the day for this family.

When we finished with that, we all went inside so that we could be with Kenneth. He had been in bed all day. When I asked how he was, he replied in his usual manner that he was fine. No, he wasn’t. The pain marks were etched in to his precious little face. It made me want to cry. Even though he continued to lay on his bed, he reached up and gave hugs and kisses and kept smiling at us. He knew we had brought him a sandia (watermelon) and that was enough to make any little boy happy!

Danelia and Arturo brought us chairs to sit in but I told her we needed to go. She knows we like to be back to Managua before dark. She asked if we could pray together. I told her I would love it if we did. We gathered in a circle near Kenneth’s bed and we all joined hands. Danelia prayed an emotional and powerful prayer and asked several times for God to bless us. Oh, my goodness…how could I ever explain to her that He has…repeatedly!

So, that’s pretty much how the day went yesterday. The heat, the classes and the emotion of the day were draining my last little bit of energy. I find I can’t talk to much about Kenneth or my own flood of tears begins. I hadn’t wanted to get attached to a little boy with cancer…God heard my voice but He also saw my heart. He knew I needed the blessing that’s known as Kenneth.
When Susanna was driving Danelia, Miguel and Kenneth home from Managua after the doctor’s appointment on Thursday, it was pretty quiet in the car. Everyone appeared to be lost in their own thoughts. I was sitting up front with Susanna and she asked if I believed that God has a plan for each one of us and that we are each called to do what He has laid upon our hearts and put in to our spirits. She said she remembered how I questioned why God would want us to come to Nicaragua. She said she thought she had the answer and that it was for such a time as this. I have thought about it a lot since she said it…I guess she’s right.

The thief...

This is a continuation of the blog about Kenneth and his cancer...it is just directly below...if you've not read it, you might want to do that first and then come back and read this...

Well, the thieves are working overtime again. This morning, the maid next door began yelling for Freddy to come help her. He ran to the side wall where he can see in to the back yard of that neighbor’s house and she came running out, yelling that there was a robber in the yard. Jim went up the driveway with Freddy and as Freddy got over there, the guy was gone. The maid said that he had on a red shirt.

Evidently, he had climbed up the utility pole and jumped over to a tree within the walled area. She happened to be in the house and looked out the back window and saw him hiding by the water tank. He must have reversed the process to get back out of the yard.
Jim came back down and went to our back deck. He saw a group of four guys standing down on the road behind our house looking around and pointing to the back of the house next door. One of them had on a red shirt. When they saw Jim on the deck, they turn and ran up the hill in to the trees.

He wasn’t able to get anything but it was still a bit unnerving for all of us. Freddy wanted me to call Susanna so he could talk to her. He told her he thought we needed to talk with the owners on both sides of us and tell them to put pressure on the police to clear out the community of squatters that have built up behind us. The house right behind us is still empty but on the hill behind and to the right of us, there are more plastic and wood shacks going up every day. I’m not sure it will do any good as the police don’t care.

Susanna did talk to us about having a dog. She wants us to take Pixie. She said she thinks it would be good for Pixie and for us. We would love to have her but I am afraid she would be “homesick” and I don’t want anything to happen to her here. Susanna said her in-compound neighbor who is actually her landlord, now has a lab, a German shepherd and two more German shepherd puppies. So she feels she’s well-protected in that area. I don’t know how much of a guard dog she would be but she would definitely bark and would let us know if someone were around…but that only works if we’re here. We are talking about trying it but also going ahead and getting a big dog puppy to be a an outside dog and act as a greater presence and deterrent to someone thinking about trying to climb the wall here and jumping in.

Felix, our night guard, is Freddy’s brother-in-law. Freddy filled him in on what happened today and now he’s very concerned. He is talking about needing “arms” and such. I am praying we don’t ever have to get to that point. I have such an aversion to guns anyway…I just can’t even imagine having one around our house. We told him we were talking about getting a dog. He wants a full-blown, fully grown guard dog tonight! That would be nice but it’s not going to happen.

But we weren’t the only ones to have excitement. Susanna’s truck was broken in to today! She was at a coffee shop having a meeting when she heard her car alarm go off. By the time she got outside and the guard got around to that part of the lot, the robbers were gone. They had jimmied the lock on her door to access the car. They were able to grab her nurse's bag but didn't have time to get in to her glove box.

We have been reminded the last few days that the enemy has come to steal, kill and destroy. We have to consciously remind ourselves that greater is He that is in us than he that is in the world. Now, back to Kenneth’s story.

We stayed busy here yesterday morning, as we still didn’t have our car back. I got another load of laundry done and spent some time researching on the internet what I could about Kenneth’s disease. I kept trying to find some sort of medical loophole.

Susanna picked us up about 2:30. We had to go run an errand and then drove up to the North Highway to go to the filling station where we were to meet Miguel, Danelia and Kenneth. We got there almost thirty minutes early. There’s never any good way to accurately calculate how long a trip through Managua is going to take. Traffic is so unpredictable that the same trip one day can take 30 minutes and another day almost an hour.

They arrived exactly on time climbed in to the car. The stress was evident on Danelia’s face. She looked exhausted. She said that Kenneth had a rough night the night before. She didn’t say much more. Kenneth was as loving as ever. He had brought a small baggie of tiny little plastic army men and the only sign that he was nervous was the tight grip he had on that little baggie. Miguel and Jim talked a bit.

It took less than 10 minutes to get to the doctor’s office. When we got out of the car, Miguel was laughing and told me that he knew I didn’t know how close we were to the Oriental Market. He was right, I didn’t. We had to park a little bit down the street from the office and there were about 5 young men just standing along a wall by the office. Miguel made sure he walked right beside me. I have to admit I always feel a bit safer in neighborhoods like that when he’s with us. He’s a good friend in that regard, always looking out for us.

The doctor came to the door of his office to unlock it and let us in. He locked it again behind us. Another reminder that we weren’t in the best of neighborhoods, I suppose. We all got settled in our various places. Susanna, Danelia and Kenneth were in the doctor’s office. Susanna had me come in so I could hear the conversation, although much of it I didn’t understand. I think that was probably a blessing. Kenneth kept taking hold of my hand or rubbing my arm. I think he just needed someone touching him at that moment. Danelia was being questioned by the doctor and at first, wouldn’t even make eye contact with him. She kept looking down at the floor or over at me. But finally, she got up the courage to meet the doctor’s eyes and I could tell from the sound of her voice, she was gaining confidence in talking with him.

He would ask why she would say something or why she thought something. He wasn’t rude but he was direct. She never backed down and always gave him an answer. He asked to see Kenneth’s records. He began looking at each one of the x-rays and cat scans and slowly going over the reports. He asked Danelia how long Kenneth had chemo. When she explained that the hospital then gave him radiation following the chemo, he was not pleased.

He explained why he didn’t think that was the best course of action with the type of cancer Kenneth has and the form it’s taken. He then wanted to examine Kenneth. He was very gentle with Kenneth, explaining each thing he was going to do before he did it. After the exam, they all came back in the office and sat down. Danelia asked the doctor to be honest with her about his thoughts. He asked for Kenneth to go in the other room. We all knew at that moment that the news wasn’t going to be good.

Jim took Kenneth in to the waiting area where Miguel was and Jim sat down on the floor with Kenneth. They sat and played army men and at one point, Jim and Kenneth’s “explosions” were getting so loud that I had to ask them to tone it down a bit. They both smiled at me and continued to play. The whole thing was surreal. I stood and looked at Kenneth on the floor. He looked just like any other little boy playing except for the ever-present mask on his face. My mind just couldn’t grab hold of what I knew was being said. My eyes saw a precious little boy who loves Jesus and who would grow in to a man who would honor God with his life. My ears were hearing that he wasn’t going to grow much older at all.

The doctor, while not wanting to take away all hope, neither wanted to give Danelia any false hope. She is one of the most controlled women I’ve ever met but the grim prognosis was too much to bear. The doctor told her that she could give Kenneth whatever he wanted to eat and she asked about candy. It surprised me that she asked that as she knows that as a cancer patient, he’s not to have a lot of sugar. We had just talked about that last Saturday. The doctor gently said it wasn’t important and reiterated to let him eat whatever he wanted. She began to cry. The doctor said that was one reason he didn’t want to treat pediatric cancer patients…he said it’s too hard when you have a case like Kenneth’s.

I asked Susanna to ask him about trying another course of chemo. He said that the doctors at Mascota had already administered radiation and because of that, he didn’t think the chemo would be nearly as effective on the cancer but would be even harder on his system. He said he didn’t know if the Mascota Hospital even had the chemo that Kenneth needed. I told him we would pay for private administration of the chemo. He then explained to us that money wasn’t the issue but rather lack of availability of those specific chemo drugs. He said that they are very hard to come by and when doctors or hospitals do get them, the protocol is to save them to use for those cancer patients who have a greater chance of survival. Kenneth doesn’t qualify. I then asked if we could bring them in from the U.S. for Kenneth’s use.

He thought for a minute and then told us that he would call the two co-heads of the oncology department at Mascota and talk to them about possibly taking Kenneth’s case. He said that the ultimate decision would be up to them. Again, he admitted that he’s not an expert in pediatrics but he does know cancer and he’s not sure Kenneth could withstand another course of chemo.
He then asked what type of pain medication Kenneth was on and how frequently. I could tell he wanted to change the subject. My frustration level was rising. I wanted to talk about a cure…he was talking about pain management. I could feel my heart pounding. Danelia told him that he was taking 10 mg. of morphine every 12 hours. She said that there was another pain medication that he also took but that the hospital only gave him morphine this time. The doctor wrote out a prescription for the additional pain medication and I told her we would buy it on the way home. Now expressionless, she nodded her head. The enemy had crept in to that room and was trying to steal the last hope that woman had.

He sat there for a minute and then reiterated he would call the people at Mascota and then he would call Susanna and let her know what he found out. We all thanked him and as Danelia was helping Kenneth gather his things, I paid the bill. We finished with the niceties and left. The quiet was unsettling. As we were pulling away from the curb, I looked up. I don’t ever remember seeing a sky like the one we saw yesterday. The sun rays shining from behind the clouds were breathtaking. We all noticed them. I kept thinking that it was God’s way of reminding us He is still in control of all things.

Susanna turned the corner and if the clouds weren’t beautiful enough to astound us, in the sky ahead of us was a complete rainbow. Each band’s color was vivid and distinct. Kenneth started talking about the rainbow and how it was a sign from God to Noah. I could feel the tears start down my cheeks. Maybe it was a sign for us, too.

We drove them home to Tipitapa. The conversation was pretty sparse. I think each of us were lost in our own thoughts. I was trying to keep the tears from overtaking me. Suddenly, I felt a small hand on my shoulder. I turned around and Kenneth had leaned forward just to put his hand on my shoulder. I patted his hand and he took hold of my fingers and squeezed them. I think he was trying to comfort me. How crazy is that?

When we got to Miguel’s, everyone got out except Danelia, Susanna and me. Susanna began to talk gently with Danelia and told her that God has never promised us that our way would be easy but that He didn’t promise us that He would never leave us alone. She nodded in affirmation and once again the tears started. Susanna told her that sometimes we just need someone to listen to the hurts of our hearts. Danelia broke down and sobbed. The tears were contagious.

It was such a tender and private time that I don’t feel comfortable sharing all that was said. Suffice to say that this woman is struggling with every fiber of her being to save her child in spite of all those who say that there isn’t anything more that can be done. She desperately wants to trust God’s plan, regardless the outcome and she just as desperately wants to hold on forever to her firstborn.

For about 30 minutes, we just let her talk and cry and pour out all the worries and concerns that she’s been keeping bottled up for over a year. The flood of raw emotion pouring out of that shattered woman was unbelievable. She was bent over almost in two, the pain of her circumstances preventing her from even sitting up straight.

Susanna asked me if I would pray and she would translate. We were still facing the back seat and took Danelia’s hands in our own and formed a tightly bound circle. It reminded me of a figurine I used to have in my old Sunday school class of three praying women holding hands. There is something about that bond of intimacy that occurs when you hold someone’s hand as you pray for them. Danelia was no longer just Miguel’s sister or Kenneth’s mother…she was my friend who is living everyday her most dreaded nightmare. I want so desperately to do what I can’t do and that’s make it all better – for Kenneth, for her…for us.

We finished our conversation and got ready to leave. There wasn’t much more to say. My own tears began and have continued off and on since. Sleep was elusive for most of the night last night. We were up a little after 5:00 this morning. I've spent a good part of the day alternating between crying and praying...I want to do something…

I decided to send out a prayer request to a group of folks that I believe will pray for Kenneth and the miracle he so obviously needs at this time. I’ve been encouraged by many of the responses. Several have said they will share this need with their churches and prayer groups. And now, I’m asking you…will you please pray for Kenneth? Will you ask your church, your Bible study, your Sunday school class, your prayer group to pray for him? His name is Kenneth Arturo Gonzales Parrales and he’s nine years old…nine years old!

I told Danelia last evening that I was going to ask you…she nodded her head and gave me a slight smile. I think there was a glimmer of hope in her eyes…and I think I heard that despicable thief who wants to steal our joy…I think I might have heard him groan.

Hope rises...

This blog is long. It is about Kenneth and what transpired on Wednesday. I will continue Thursday's events in the next blog...actually the one that will show above this one.

Well, the squeezing continues. Susanna met Jim at our mechanic’s first thing Wednesday morning to give him a ride back to the house. What we had thought was going to be the loss of a car for a day was going to be the loss for 3 days and the cost was going to be once again, much more than we had expected. I could feel the knot growing in the pit of my stomach. I began trying to find things to be thankful for regarding the car situation. God quickly brought to my mind that He had kept us safe on the roads and that we had not broken down anywhere along the way. He also reminded me that I was to trust in Him with all my heart and not try to figure why this car thing was such an issue…He was in control of all of it. Okay.

Not long after that little heavenly reminder, my phone rang. It was Susanna. She had talked with her oncology contact and told me that the doctor was willing to see Kenneth and give his opinion regarding his condition. We would need to have another x-ray done of his pelvis area and another blood test. She told me where we could go to get it done that day and that she would be happy to take us. She had a light schedule this week so she was free to help us. I was so excited.

I called Miguel and asked him to call Danelia right away. He told me that his mother had said that Danelia and the children had gone to Managua but he didn’t know why. I asked him to go ahead and call her and maybe we could meet her somewhere and get the necessary exams done. He said he would. I was thinking how great it would be if we didn’t have to go all the way to Tipitapa to turn around and come back in to Managua.

I waited and waited but didn’t hear back from Miguel. I called him back about 20 minutes later (remember, I said I was short a stitch or two on patience?). He said that Danelia wasn’t answering her phone and that she must have left it at home. He told me she should be back home around 2:00 or so that afternoon. I told him to call me as soon as she got home so we could try to get Kenneth in to get his testing done. Miguel assured me he would do so. I was discouraged and frustrated. I called Susanna and let her know. She just told me to let her know when I heard from Danelia.

Again I waited…this time about 10 minutes. Those stitches were dropping fast and furious. I called Miguel back and asked him for Danelia’s number. I told him I wanted to try to call her myself. He said okay and gave it to me. I could hear the shrug of his shoulders in his voice. I told him it was important we get this testing done that day and that I would use my minutes to call Danelia so he didn’t have to use his. I’m sure there was another shrug.

I immediately tried Danelia, not expecting her to answer but was almost giddy when she did. I asked her where she was and she told me they were at the Mascota Hospital. I could tell by her voice she was upset. She told me that Kenneth had been running a fever off and on since Saturday and she asked me if I remembered his fever on Saturday. I told her I did. She said that Kenneth began experiencing a lot of pain and that she was out of pain medication for him. He hadn’t slept much the night before and that his pain was now all the way down to his knee and that his arm was hurting him.

I tried to explain to her where we needed to go to get the testing done. I was failing miserably. I told her I was going to have Susanna call her right back and talk with her. She said okay. So I called Susanna and gave her Danelia’s number.

A few minutes later, Susanna called to tell us that Danelia thought she would be through at the hospital by noon so we were going to meet her there and then head on over to the area to get the exams done. Susanna was going to pick us up about 11:30 so we could go meet Danelia and the
kids.

When we arrived at the hospital, we thankfully had a gate guard who allowed us to go through without question. Susanna said they’re usually quite strict there about allowing “outsiders” to come in. We waited in the appointed place for some time with no sign of Danelia. Susanna called her again and she said they were waiting on the doctor to come back in to dismiss them.
Again, we waited…and waited. Thankfully, Susanna has about the same level of patience that I have. We decided to go looking for them. Susanna thought they were probably in the emergency room area since they came without an appointment. We walked through the area to a dirty, run-down entrance where there were women with children laying on the ground and sitting in the shade. It would have been an appalling sight if it would have been the first time I had seen such conditions. Sadly, it wasn’t. But even the lack of shock didn’t negate the sense of indignation that this is how the poor must live and the second-class treatment they so often receive.

The masked guard (in response to Swine Flu fear)at the ER door enjoyed his position of authority. When Susanna asked if we could come in to find Danelia and the kids, he said we needed to wait there outside the door and he would go check on him. Susanna gave him Kenneth’s name and he carefully and deliberately locked the door behind him. I’m sure the waiting women had to feel a bit of boost that they weren’t the only ones to have to remain on the wrong side of the locked door.

After a few minutes, the guard returned and said that Kenneth wasn’t there. Susanna explained the situation to the man and that we had just talked to his mother and asked if I could come in and walk through the ER and see if I could find her. He said they were probably over in the oncology department. Susanna asked him again and although he wasn’t happy about it, he agreed to let me do so, saying Jim and Susanna had to remain outside. I thanked him and began my trek through the ER.

There were several rooms off the main corridor that were filled with women who were standing or sitting holding their sick or hurt children. All the little ones seemed to be crying or whimpering. Everyone was waiting their turn for a doctor to say they were next to be seen. I wound my way around the hallways, looking through windows and doors, but to no avail. I am guessing seeing a white face in those hallways is not a usual thing as almost all the doctors and nurses stopped their activity and stared as did the women. I would say all noise stopped but that’s not true. The crying and moaning of the little ones continued. I was glad when my search came to an end and I returned to the exit.

The guard saw me coming and met me, escorting me to the door, asking me if I found them. I shook my head no. He told me triumphantly that he knew they weren’t there and that he had told us that. I agreed, thanked him for allowing me to look and wished him a good day. I prefer to think he must not have heard me as he didn’t respond in kind. His good-bye was the very deliberate clicking of the door locking behind me.

Jim was waiting for me by himself outside the ER door. Susanna had returned to the parking lot in case Danelia and the kids came out. We walked back to the main area and decided to go scope out the oncology department. The man at that desk was much more courteous and told us which one of the series of colored stripes painted on the wall that we were to follow through the hallways. Our stripe was pink.

We found ended up in a hallway with very little signing. Susanna saw a man sitting at a desk behind a glass door in a small hallway that branched off the main hall. We went in there and she asked about Kenneth. He had no idea and kept asking her to repeat his name. He wanted to know the doctor’s name. Of course, we didn’t have that info. She called Danelia again and she said they were just leaving and we would meet them out front. We thanked the cordial man and as we were leaving to get back in to the main hallway, we literally met Danelia and the kids at the corner.

The kids were so excited to see us and we got lots of hugs. Danelia also gave a very tight hug. I introduced her to Susanna and we walked back to the parking lot. Danelia had to get a prescription for morphine for Kenneth filled at the pharmacy. Because the script was written by a Mascota doctor, she could get it filled for free there. Jim and Susanna took the kids to the car so that they could sit in the a/c. Kenneth was running a fever and she thought they would be more comfortable there.

As Danelia and I began walking toward the pharmacy, we met her husband who was carrying a plastic bag with all of Kenneth’s existing x-rays and lab reports. He had taken off work to bring them in to us. He took the prescription to get it filled and Danelia and I stood there and talked. I could tell she was upset and as I gave her a hug, she began to cry. She has been under so much stress for over a year and it was taking its toll on her. Most of her conversation consisted of her worries about what was going to happen to Kenneth and how hard it was to watch him be in pain and not be able to alleviate it.

I told her that God provided someone else for us to talk to and that if she and her husband agreed, we wanted to get the new test results that afternoon and then see if we could get in to see the doctor. We had already covered most of this ground, but I wanted them to know that we were going to take care of the financial end of this second opinion and that was something they didn’t need to worry about. It was out of respect and courtesy that I asked their permission. And they gratefully and graciously gave it.

We left to go get the x-ray done first but on the way, realized that none of them had eaten anything since early that morning, if then. They had arrived at the hospital at 7:00 a.m. It was well past 1:00 at that point. Susanna and I agreed that everyone needed to eat and so we went to Doña Blanca’s. This was the first time we had been back since before we had gone back to the States in June. It was so good to see everyone. And the kids were super excited…this was a new thing for them. We asked if we could buy their lunch and again, they agreed. Danelia’s husband very quietly thanked me.

Danelia seemed embarrassed that we were buying their lunch. She told me that Lindsay could share her plate. I assured her it wasn’t necessary but she said that Lindsay wouldn’t eat much and she would do better eating off her plate. We all decided to get some food so that they wouldn’t think we were feeding only them. I wished I had been hungry…I love Doña Blanca’s! Kenneth got a plate full of food but when it came time to eat, he just took a few bites and didn’t want to eat more. We got a to-go box so they could take the food home with them.

The next stop was to get the x-ray at Salud Integral, the private hospital. This is where Danelia had first sought treatment for Kenneth because of the oncology department, but because they didn’t have any money, they refused to see him and sent her to Mascota, the free hospital. The class attitude was still quite obvious. That is something that still angers me here. I hate it and I hate how everyone falls in to their “place”. We were immediately taken care of…Danelia and her family sat virtually ignored. Thankfully, they were with us or I wonder how long it would have been before someone even spoke to them.

Once again, having Susanna with us was invaluable. The doctor had told us he wanted a front view and a lateral view. The woman with whom we were dealing with at the front office, seemed a bit cranky with life in general. She told Susanna that they could only do a front view and that there was no such thing as a lateral view – that it didn’t exist. Susanna explained very patiently to her what view the doctor wanted. It didn’t matter, the cranky lady again said such a view was non-existent. Susanna tried to call the doctor. He didn’t answer and so they continued to discuss this for a little bit. The technician was obviously getting a bit peeved. We decided to get what we could and simply tell the doctor that the department refused to do a lateral. This is the hospital where he is the head of oncology so we imagined that wasn’t going to be good news for someone on the staff.

We really didn’t have to wait terribly long until they called Kenneth’s name. Susanna had us go back with Danelia…I think more for the presence of gringos being a sense of insurance of good treatment than anything else. The x-ray technician, again a woman, was very sweet with both of them and with us. She had been the first person there who gave even a modicum of respect to Danelia and her family. But even so, the remarkable thing was that all the questions were directed to me, not to Danelia. I could answer only one of the questions – didn’t understand most of them and didn’t know the answers to the rest of them. No one would ever confuse which one of was Kenneth’s mother. It seemed to bother me more than Danelia…I guess she’s used to it. I don’t ever want to get used to that. Although, I love it that Kenneth calls me Mamita and I cherish his hugs and lavish affections…I want his mother to be treated as she should. I think Jesus wants that, too.

The x-ray tech asked us to step outside the room while she took the x-ray. We went out in the hallway and stood. The tech closed the door and just a few seconds later, here came the cranky lady from the front desk. She saw us standing in the hallway and came down and told us we needed to go out and stand in the waiting room. She pounded on the posters and told us that it was dangerous for us to be there. She then motioned us down the hallway. I smiled and thanked her and we turned around and walked down the hallway. She looked at me as if I had lost my mind. My mind was relatively safe but my tongue was in mortal danger of being bitten off.

Kenneth came out a few minutes later and he went to join Susanna, his dad and his sister at the main desk area. Jim, Danelia and I waited for the x-ray and the reading of it. We received it in a relatively short time, thanked them and left. The x-ray was terrible, but the radiology report said everything was normal. Danelia and I looked at each other…could it be that the doctors at Mascota were wrong? Maybe the miracle we were all hoping for had already occurred and we were holding the proof in our hands. There were shadows and marks on one side of the pelvis but maybe it was just a bad film…after all, the radiologist said it was normal.

We were all more upbeat as we headed over to the lab to get the blood work done. I was amazed at how matter-of-fact Kenneth was about getting the work done. It made me sad to realize he’s an old pro at getting stuck with needles. I gave him a hug and he pulled my face down to give me a kiss. I gave him one in return. I could feel my eyes beginning that all-too-familiar stinging. I told him to go with Jim while I paid the bill. God was gracious to help me get a grip on it right then.

Susanna went back with him to get the blood drawn. Within just a few minutes we were able to leave. The report wouldn’t be ready until the next morning. Susanna had talked with the doctor and our appointment was changed to 4:00 p.m. the following day.

It had been a long day for the kids. Kenneth was still running a fever and Susanna thought it best if we go ahead and take them home. We wished we could have seen the doctor that day but it just wasn’t going to happen. Susanna showed Danelia where to meet us on the North Highway the next day. She said we would then go on to the doctor’s office from there.

Danelia asked us to take them to Miguel’s so that she could ask him if he could go with us on Thursday to the doctor. Her husband had already lost a day of work and didn’t think he could take off another so soon. When we got to Miguel’s, he wanted to know how we had found Danelia in Managua. I laughed and told him with my cell phone. He asked Danelia why she didn’t answer her phone when he called her and she said that was when the doctor at Mascota was talking to her about Kenneth. Miguel wanted to make sure I knew he had tried to call her!

We introduced Susanna to the rest of Miguel’s family and although it’s not something that’s usually done, I told Miguel’s mother and Elizabeth that we just couldn’t stay. They understood and we all said our good-byes. I’m pretty sure that the conversation at that house that night was similar to the one we were having in the car on the way back to Managua…there was still hope. We still had the oncologist to speak with the next day and after all, the radiologist’s report said the x-ray of the pelvis looked normal. We were all ready for some good news. It had been a long day for all of us. I’ll write about Thursday in the next blog.