It was difficult for me to wait for my appointment with Sam. I couldn’t concentrate on anything at the office so at around 2:30 I left the office and started for Sam’s office. I knew whatever he had to tell me was not good. I was afraid that it was Joel but I also was not sure it wasn’t one of the other boys. By the time I had driven to downtown and parked the car near his office, I was a basket case.
I walked into the office shortly before 3:15 hoping that Sam would be available early. I was disappointed. He was running behind schedule and would not be able to see me for another half an hour. It was probably the longest half hour that I have ever spent.
Finally he finished with his last patient and I was ushered into the office. After the perfunctory greetings I sat down in a chair in front of his desk and prepared myself for the worst, or at least I thought I had.
"Crane, the physicals for TJ, Chris, Larry and Lenny all are normal for their age. The only thing that I would suggest for them is a multi-vitamin daily," he said as he picked up each of the files and briefly looked at each one.
"But, what about Joel? Is there something wrong with him?" I choked out my questions.
"There are some abnormalities in his blood that are very worrisome. He shows some signs of anemia which probably accounts for his shortness of breath. That is not the main concern, however. What worries me most is the number of immature lymphocytes. I noticed in his physical that his lymph nodes were slightly enlarged but not outside the normal range.
"I have consulted with Dr. Ahmad Darwish, a pediatric oncologist at Christus Santa Rosa. I had him look at the report and had the blood sample sent to him. He and I are in agreement that the results of the blood tests indicate a high probability that Joel has Acute Lymphoblastic Leukemia."
"Oh, my God! That can't be. It just can't be true," I sobbed. "He has endured too much already. Why?"
"I know, Crane. I have no explanation why this should happen to him. I have become very fond of him also over the past nine months. He has bravely faced all the things we have put him through without complaint.
"Now because we have caught this early, there is an excellent chance that it can be treated successfully. There is one more test that we will want to run before we make the final diagnosis. It is not a pleasant one. We will want to take a sample of his bone marrow to confirm it."
"What is that? What do you have to do?" I asked trying to regain my composure.
"It's a bone marrow biopsy. During this test, a needle is inserted into a bone in the hip and a small amount of bone marrow is removed and examined under the microscope. That will enable us to determine what kind of leukemia he has, if indeed that is the case. There is some pain involved in this procedure. We try to eliminate as much as we can with local anesthesia but this is not always completely successful.
"If after the biopsy is examined we confirm it is leukemia, we will probably order a spinal tap to determine if there are cancer cells present.
"Crane, I know that this is an awful lot to take in at one time. The quicker that we get the biopsy taken the quicker that we can start the treatment plan," Sam concluded.
"Does that mean chemotherapy?" I asked suddenly regaining my analytical mind.
"Yes and depending on how advanced it is and if the nervous system is involved it could be quite protracted. In some cases radiation therapy is prescribed. There is also some testing going on with bone marrow transplants, but in my opinion that is a last option."
"Where can he get the best treatment?"
"There are a couple of places. The most famous one is of course, St. Jude Hospital in Memphis. The other one that I would recommend is M.D. Anderson in Houston. Both have excellent reputations for treating children."
"When can we get the biopsy taken?"
"I have set up an appointment with Dr. Darwish for 8:30 tomorrow morning at Christus Santa Rosa. He will perform the biopsy and should be able to give you the results in about an hour. I have a number of articles on childhood leukemia that I'm going to give you to read. There are a number of good sources for more information that I will compile and give you. I'll drop them off at your house tomorrow depending on the outcome of the test."
"Thanks, Sam," I said wiping my eyes with my handkerchief. "What do I tell Joel?"
"For the time being, I would only tell him about the test tomorrow. That is going to be tough enough. If the results of the test are confirmatory then he will need to be fully informed of the disease and the consequences of the treatment."
"God, I didn't know that being a parent was going to be so hard," I said getting up and taking the material that Sam handed me.
"Are you going to be okay to drive home?" Sam asked. "Joel and those boys need you now more than ever. Please take care and drive safely."
"I will," I said as I left the office.
The drive home was the longest I had ever experienced. I even had to stop once in Bulverde to wipe the tears out of my eyes and settle down enough so that I could drive on home. As I neared the house I tried very hard to compose myself so that my appearance would not upset the boys.
They didn't seem to notice if in fact I was looking or acting differently. Hildy did notice something was different and asked me what was wrong. I put her off, telling her I would talk to her later.
"Joel, why don't you take your brothers into the family room and read them some more of the Robinson Crusoe book?" I suggested after the supper dishes were cleared.
"Okay," he said. "Let's go get the book TJ."
After I heard Joel begin reading to the others I turned to Hildy. "Dr. Greene called me to his office this afternoon. The news that he gave me was not good. He believes that Joel has a high probability of having leukemia."
"Oh Jesus Lord no! It can't be. It's just not possible," she sobbed.
"I have to take him in for another test tomorrow morning to confirm the diagnosis. I have to tell him tonight about the test without causing him too much stress. The only good news is that Sam says that because we found it early there is a good chance of it being treated effectively. There is hope for complete remission."
"Is there anything we can do?" she asked dabbing at her tears with the hem of her apron.
"Pray for him and try to help keep his attitude positive. Having a positive attitude has been shown to enhance the outcome according to the literature that Sam gave me. Also I would appreciate it if you didn't tell anyone until we know for sure."
"Would you mind giving the boys their snack after while? There is some ice cream in the freezer and there are cookies in the cookie jar. I think I need to go to my room. This has been very unsettling. I just need some time to absorb all of this. Tell the boys I wasn't feeling well and that I'll see them in the morning," she said as she gave be a tight squeeze and then headed off to her apartment.
I went to check on the boys. Larry, Lenny and Chris were sprawled on the floor listening to Joel as he read. TJ was leaning against Joel as he did to me when I was reading. Joel looked up from the book when he noticed that I had come into the room.
"Dad, this is harder to read out loud than when I read it to myself. The words are strange to say," he said.
"I know, son. Let me read it for a while and you can take a rest," I said sitting down and taking the book from him.
He joined the three on the floor and TJ slipped under my arm as I started reading where Joel had left off. I continued to read to them for about another half an hour before I could see they were getting restless.
"Okay, that's enough for tonight. Why don't you go play with your new video games? I need to talk to Joel for a minute," I said to them.
After the four of them left I motioned for Joel to join me on the couch.
"What's the matter, dad? Did I do something wrong?"
"No, son, you didn't do anything wrong. What I need to tell you is that you have to go see the doctor for another test. This is going to be different from all the others that you have taken. The doctors want to take a sample of your bone marrow to see if it is okay. What that means is they will insert a needle into your hip area about right here," I said pointing to my hip. "Then they will withdraw the sample and analyze it. Do you have any questions?"
"Am I sick? Is that why I'm so tired all the time and have so many bruises?"
"That's what we want to find out, son. We have to be there early so I will get you up before the other boys so we can be there by 8:30. Now go play with your brothers. Hildy said you guys could have ice cream and cookies for your snack after while."
I put the boys to bed as usual and I followed almost immediately. That doesn't mean that I was able to sleep. I tossed and turned and mulled over everything that had happened today. I don't think I got over a couple of hours of sleep when my alarm went off at six. After showering and shaving I went to wake up Joel. To my surprise he was awake but still in bed.
"Time to get up, son. You wash up and I'll see if I can't find us something for breakfast," I said giving him a hug. "Try not to wake your brothers."
I went to the kitchen and was just beginning to search for something that I could fix us for breakfast when Hildy came in and took over. She quickly made us some oatmeal and toast. When Joel arrived, Hildy gave him a big hug.
We left for Christus Santa Rosa just after 7:30. Thankfully the traffic was not too heavy so we were able to get to the hospital in plenty of time for our appointment. I approached the reception desk and asked where I could find Dr. Darwish. The elderly black lady behind the desk began trying to explain the complicated directions to get to his office when a "candy striper" who was standing nearby volunteered to show us the way. It was a good thing because I would never have found the room from the directions that were given. I think hospitals are deliberately designed as mazes to confuse patients and visitors.
I thanked our guide as she led us to a room labeled ONCOLOGY with Dr. Darwish written below it.
"What does oncology mean?" Joel asked.
"Well, son, it means the study of abnormal cell growth."
"It means like tumors and things."
"Do I have a tumor?"
"I don't know. Dr. Darwish should be able to tell us in an hour or so."
Thankfully Dr. Darwish came in at that moment. He introduced himself to me and to Joel before settling down in a chair that he pulled up so that he was sitting right in front of us.
"Joel, has your dad explained to you what we are going to do today?"
"Yeah, he said you were going to stick a needle into my hip. Will it hurt?"
"I try to make it as painless as possible. Most people only feel a pinprick when we shoot in the painkiller. After that all you should feel is the pressure as the needle goes into the bone. A few people do have some pain but it is usually not severe. I understand from Dr. Greene that you are a very brave boy. Do you have any questions?"
"Do I have a tumor?"
"Why do you ask that?"
"Dad said that oncology studied tumors."
"Well, that is part of what I do. There are other things that an oncologist does. I look for cells that don't grow right and make people sick. That is what we are trying to find out with you. We want to know if there are any bad cells in your bones. Are you ready now?"
"May I stay with him while you take the biopsy?" I asked. Looking at Joel I saw him nod his head.
"Yes of course. It is usually less stressful if a parent is present. Now if you will both follow me we will try to get this over with as soon as possible," he said as he stood up and started toward the door.
I put my arm around Joel and we followed Dr. Darwish down the hall to another room with an examination table and all sorts of apparatus.
"Now, Joel, I want you to go behind that screen and remove your clothes and put on this gown. You may leave your stockings on but remove all the rest of your things. When you are done I want you to climb up on the table and we will get started."
Joel looked at me hesitantly, but when I squeezed his shoulder he complied. He handed me his clothes as he came out from behind the screen. Dr. Darwish stepped out of the room while Joel was behind the screen. Joel had no more then got seated on the table when a middle aged nurse entered the room carrying a tray with a small vial and what looked like a syringe inside a plastic package. After setting it down on a small side table she opened a wall cabinet and removed a couple disinfectant swabs.
"Honey, I need for y'all to lie down on your left side so that I can get your hip cleaned up," she drawled in her thick Texas accent.
Joel started to complain when she lifted his gown up and exposed his bare bottom. "It's alright, honey, I've seem more youngen's butts than y'all could shake a stick at."
For some reason this struck Joel as funny and he started giggling. He giggled all the time the nurse swabbed the disinfectant on his hip. He only stopped when she filled the syringe with the anesthetic and injected it in two places in his upper and lower hip area. She covered the area with a large gauze pad and began picking up the used syringe an swabs.
Before leaving the nurse said that it would take about ten minutes before his hip would be completely deadened so we might as well make ourselves comfortable. I didn't think that was possible but I tried to be calm for Joel's sake.
It seemed like an hour but it was really only twelve minutes when Dr. Darwish returned with two young looking men in white coats that he introduced as residents and that they would be observing the procedure.
I went and stood by Joel's head as the three doctors gathered around the table. Dr. Darwish poked at the hip several times asking Joel if he could feel anything. When he was satisfied that the area was sufficiently deadened he took out the largest needle I think that I have ever seen. I tried not to let my feeling of panic show on my face as he began probing Joel's hip for the right spot to insert the biopsy needle. I saw the needle start in but had to look away. I looked into Joel's eyes and tried to exhibit a calm that I did not feel. I held both of his hands in mine in case he felt any pain so that he wouldn't try to grab for the doctors hands.
Joel gave a grunt as I heard the needle enter the bone. I could see the tears forming in his eyes.
"It's okay, son, it will be over soon. You're doing fine. You're a very brave boy. I love you," I said leaning down and kissing his forehead.
The procedure did not take that long but it was not over quickly enough for me. There were beads of sweat standing out on my forehead and I could feel sweat dripping down my back. I felt like I had run a mile. I was exhausted and all I had done was to hold Joel's hands.
Dr. Darwish put a small bandage over the spot where the needle had gone in before telling Joel that he could get dressed with my help. The local anesthetic might make walking a little difficult for a while until it wore off. He said that an orderly would be by shortly with a wheelchair is case we wanted to go to the snack bar. He would have the results in about 45 minutes and asked us to meet him in his office then.
The mention of snack brought a sense of urgency to Joel's dressing. I was helping him with his shoes when the orderly arrived with the wheelchair. The young Mexican-American man offered to escort us to the snack bar. I thanked him and accepted his offer since I had no idea where it was.
Joel thought it was fun to ride in the chair specially when Juan (our orderly) made sounds like a race car and took a route that bore a striking resemblance to a gran prix track. It was just the thing to brighten his and my spirits.
There were several other children in the snack bar with their parents. Some were in wheelchairs like Joel. Others were attached to IV bottles hanging from metal stands on wheels. Joel didn't seem to notice. He had his eyes fixed on the cinnamon rolls covered with white icing. He ate one and drank a pint carton of milk and then looked at me with that too familiar hungry look. He got another one.
Despite our circuitous route to the snack bar I was able to retrace our path to Dr. Darwish's office. We had to wait a few minutes before he joined us. He looked at me and I knew the answer was not what I was hoping for.
"How would you like me to proceed? Do you want to talk to me alone or do you want Joel here as well?" he asked.
"Joel will stay," I said wrapping my arm around him and pulling him close.
"Very well then," he paused looking at the folder in front of him. "I could give you the numbers but they wouldn't mean anything. It all boils down to one thing, the diagnosis is ALL (Acute Lymphoblastic Leukemia). I think that Dr. Greene told you that we would want to do another test if this was the results. We won't do that today. It will have to be done before any treatment is begun."
"Did he say I got leukemia?" Joel turned to me and asked.
"I'm afraid so, son," I said squeezing him even tighter.
"Am I gonna die?" his beautiful azure eyes looked into mine with the most fear that I had seen in them since the whiskey incident just after he came to live with me.
"No way! I'm not going to let anything take my Joel away from me. Your brothers and I need you too much."
"Joel," Dr. Darwish spoke up, "we will have to begin a treatment program for you very quickly. However, with us finding your leukemia so early I can almost guarantee that we can put it into remission."
"I want the best treatment possible for him," I said. "I don't care what it costs. I'll take him anywhere at anytime to make sure he has the best available. I would be interested in your recommendation on where he can get that treatment."
"I only see two choices for his treatment. Dr. Greene, I'm sure, told you about St. Jude. They do fantastic things there. M.D. Anderson is also a great choice. They collaborate very closely with St. Jude and usually participate in the same clinical trials of new therapies. Their success rates are on par with St. Jude. Given that M.D. Anderson is only three hours away by car I would probably choose it. There would be less impact on your family being this close. Really, the choice is yours."
"When can we begin his treatment if we go to Anderson?" I asked.
"Before I came in here, I talked to a colleague there who is head of the oncology department. He has an opening that he can see Joel tomorrow at three o'clock. After his evaluation he will probably admit Joel to the hospital to begin his treatment on Wednesday. If that is your choice I will call him and confirm the appointment."
"How long will he have to be in the hospital?"
"That is hard to say. It all depends on the course of treatment that is selected. As a rough guess I would say at least a month and then he would have to go back for a day or so every couple of weeks for a while. During the time he is not actually in the hospital he will also have to take some form of chemotherapy."
"Very well, let's do it. I will have Joel there at three tomorrow."
Dr. Darwish made the phone call while we waited. Everything was confirmed before we left. He gave me a couple of pain pills for Joel in case his hip began bothering him. I thanked him, gathered Joel up and we headed for the car. Neither of us had much to say.
Joel was silent for most of the way home before he asked, "What's gonna happen to me? Do I have to go to the hospital?"
"I'll try to explain as much as I can to you when we get home. I want your brothers to hear about it too. Dr. Sam gave me some articles on leukemia yesterday and he said he would stop by on his way home tonight and bring some more. I know you have a lot of questions and I'll answer them if I can. If I don't know the answer we'll ask Dr. Sam when he gets there. To answer one of your questions now, yes you will have to go to the hospital. I will be there with you."
It was almost lunch time by the time we got home. The other boys were full of questions as we walked in the back door. I tried to be forthright and at the same time not be too graphic about Joel's condition and his upcoming treatment. I was able to answer most of their questions but what helped the most was when Hildy announced that lunch was ready. Becky Sue had sat quietly while I talked to the boys, but I could tell she was trying very hard to hold back the tears.
I elected to skip lunch and make some phone calls. The first was to a corporate apartment leasing company that CCC dealt with when we had staff living in Houston while they worked on projects. The apartments that they rented were totally furnished except for food. I asked if they had two units available. I wanted a two bedroom and a three bedroom apartment. Thankfully they had some available in a very nice complex with a pool and exercise room. Best of all they were not too far from the Medical Center.
The second call was to a private jet service to see if I could charter a jet to take all of us to Houston tomorrow. When they asked how many passengers I told them to count on eight. I knew there would be seven for sure and if I could talk Becky Sue into going that would make eight.
The third call was to a limousine service in Houston to have them pick us up at Hobby airport and take us to the apartment. I would also need it to take Joel and me to the hospital. In order to feed the hungry hordes Hildy would need to go to a market so she would need transportation.
The fourth call was to the office to tell them not to expect me back until I let them know. I told them that the only way to get in touch with me for a while was to page me. As soon as I got a phone number in Houston I would let them know. I didn't share with them the reason I was going to be out of town just that it was a family emergency.
After the last call I sat back trying to think what else I needed to do. Things were happening so fast I was sure that I would forget something. Hildy came in carrying a sandwich and a glass of iced tea as I was sitting there.
"Here, eat this," she ordered placing the plate and glass on my desk in from of me.
I knew better than to refuse.
"Sit down Hildy," I said rubbing my eyes. "I need to let you know what is happening." I went on to describe the arrangements that I had made. "I'm sorry if I was presumptuous in assuming that you would travel to Houston with us. I think of you as a vital part of the family and the glue that holds us together."
"I would have been insulted if you didn't include me. Of course I'll go with you. Are you going to ask Becky Sue if she will go?"
"Yes. What do you think? Will she be willing to go?"
"I'll get her," Hildy said getting up from her chair.
Shortly she came back with Becky Sue in tow. When I explained the situation to Becky Sue she was at first hesitant, but when I assured her that she and Hildy would be sharing a two bedroom apartment and that I would be paying all of her expense she accepted.
Hildy and Becky Sue left to begin preparations for tomorrow's trip. The phone rang and I answered it. It was John asking to speak to Joel. He picked it up in the family room. John and Joel had become very good friends over the past six months. I never inquired into the details of their friendship. I relied on Joel's good judgment to keep it at an appropriate level.
"Dad," Joel said sticking his head into the study. "Can I tell John about my leukemia?"
"If you want to, son. Make sure that you tell him that he can't catch it from you."
The rest of the day was a flurry of activity. Packing for five boys and making room for everything that they wanted to take was an adventure. After looking at the mountain of stuff which didn't even include Hildy's or Becky Sue's luggage I decided that the plane could not hold it all. Since we were going to be gone for up to a month I didn't want for the boys to have to leave all of their toys behind. It was going to be upsetting enough for them. A courier service was the answer to our stuff problem.
I contacted a service and arranged for them to pick up the majority of the baggage and have it delivered to our new temporary home by noon tomorrow. Becky Sue left to go home and pack her clothes.
Sam stopped by as promised and dropped off more reading material for me. After looking at some of it I really didn't want to read any more. Much of the material was intended for medical professionals and was extremely graphic in its descriptions of treatments and consequences of various chemotherapy agents.
I convinced the boys to go to bed a little early explaining that we had a busy day and that we had to get up early to get to the airport for our flight. This did not happen before they had their evening snack.
Before I went to bed I called Eric and explained to him what was going on and asked him if he would stop by the house now and then to check on things. He was stunned by the news and readily agreed to look after things for me.
I went over my list one more time before I turned in. I noted that I had neglected to call Gerald and Carlos to let them know I would be out of town but that could wait. If they called the office Carol would let them know.
Exhaustion from the day's events had begun to take its toll as I slipped into bed. Laying there my brave façade that I had maintained throughout the day collapsed. My fear for the outcome of Joel's illness overwhelmed me and I began sobbing uncontrollably. I could not bear to even consider the possibility of losing him. Tears streaming down my cheeks, I reached for the box of tissues I kept on the bedside table. Instead of finding the tissues my hand encountered a pajama clad boy.
"Why are you crying dad?" Joel asked as he slipped into bed.
"Because I love you. I told you that I would never let anything hurt you again, but I'm helpless to prevent what's happening to you now. I would do anything for it to be me that was sick instead of you."
"I know," he said as he snuggled against me and promptly went to sleep.
I was not surprised a little later when TJ joined his brother in my bed.