I wish they could cut my leg off instead

Prepare yourself for the most heart wrenching blog I've ever written.  

This sad story begins last Monday, December 3rd as I was walking alone up the hill from the Lutheran creche where I work as a missionary.  A woman walking towards me, lunges at me - grabs my arm and said, 'Urgent Prayer!'

I follow her some distance to a house.  Now, I've been in many of the homes here in Ntshongweni, South Africa.  Some are quite comforable, all quite small, all are modest but this one definitely was a hovel.  There I find a 13 year old who would break my heart. 

Meet Khayelihle.

His left left was grossly swollen from the knee down and he could not straighten it.  He was in pain.  This mystery woman asked for prayer and so I prayed aloud for our Heavenly Father, God, the Great Physician to intervene and help this helpless child.

I gave Khayelihle two Tylenol, told him to prop his leg up and gave the family a 100 Rand ($11.00) to take a 6 Rand taxi to the Ntshongweni clinic.  They said - through the mystery interpreter - that they had been to the clinic, which sent them to the government hospital, which sent them to a different hospital and they all said they, 'didn't know what was wrong with his leg.'  I could feel their frustration.

I sent this picture to a physician friend of mine in Phoenix, Lorna, who immediately emailed back that this was serious, listed all the possible diagnosis.  

Ginger, my ministry partner suggested that I take him to the physician who sees the Lutheran missionaries for free (me and Ginger) and the orphans who are under the Lutheran umbrella living in the care homes provided for the orphans.

Wednesday, December 5th  was his appointment with Dr. Swart. There was a man who attends our church who happen to have the day off work and was meeting with Pastor that morning. He also owns a bakkie (truck) was available and drove us from Ntshongweni into Hillcrest.  Pastor Thwala had to carry Khayelihle to the bakkie since he is unable to walk on this leg - this was a sweet moment.

Dr. Swart took one look at this leg and pronounce that it was a tumor.  I wanted to scream, 'aren't you going to touch it?' Aren't you going to give us a menu of possible options?  

press 1 for broken leg; press 2 for water on the knee; press 3 for anything besides a tumor.

Dr. Swart sent us to radiology and they were sympathetic to his blight and also performed the X-rays without charge.  

Back to Dr. Swart who showed Pastor Thwala and I the x-ray.

This is an image from Google of a healthy leg.  The top of my friends tibia bone looked like a head of cauilflower.  

Osteosarcoma is the most common type of bone cancer, and the sixth most common type of cancer in children. Although other types of cancer can eventually spread to parts of the skeleton, osteosarcoma is one of the few that actually begin in bones and sometimes spread (or metastasize) elsewhere, usually to the lungs or other bones.

Because osteosarcoma usually develops from osteoblasts (the cells that make growing bone), it most commonly affects teens who are experiencing a growth spurt. Boys are more likely to have osteosarcoma than girls, and most cases of osteosarcoma involve the knee.

Dr. Swart called the next day with the diagnosis from the radiologist, same thing: Advanced Osteosarcoma.  I was to come by their office and pick up a letter from her and also the X-rays which were on a CD.  I did this on Thursday.  

From Wednesday to Monday was the longest wait of my life.  Dr. Swart said I was to have the boy at R. K. Khan hospital at 8am on Monday, December 10th and taken to the Outpatient Orthopedic Department.

Since I couldn't find anyone with a vehicle to volunteer to take us, I had to hire a man who drives a taxi.  Harold is my friend as well as my wheels.  For 300 Rand ($33.00) Harold picked me up at 5:30am - we arrived at their house at 6am, the mother and father carried their son to the car.  We arrive at the hospital at 7am.  

R. K. Khan is a extremely huge government hospital in Durban, South Africa.  Harold knew where to go and he knew how to get us a wheelchair.  Well, it was actually the shape of a wheelchair and it did have 4 wheels but it was made out of PVC pile material and wood.  It was large and looked very uncomfortable.

I ask and asked until we got to the OOPD.  Outpatient Orthopedic Procedure Department.  It's 6:30am and the room is packed.  I stand there.  I stand there a really long time.  I had no idea what to do or where to begin... no window, no employees, just two desks and miles of wooden benches.  Just then an angel came to my rescue and said I have to have a chart.  A Chart?  Where on earth do I get a chart?  Sandra was my angel and leaving mother and son, Sandra takes me winding, turning, up, down and around until we arrive at a window.

Chrit, an Indian man is there and I said I need a chart. He said I need to see the Sister before I see him.  Sister?  I ask if this is a Catholic hospital since nuns are the only Sisters I know.  No, Zeal wake up and smell the South Africa government medical system.

Sandra, gets me to the Sister who rudely states that she must see the patient.  O bother, snaking our way back to OOPD we fetch mother and son and the wheelchair and head straight back from whence i came.  Produced the child and taking one look at the boy gave us a card that said Urgent.

I take that back to Crist who loves my American accent and American wildlife.  He would like DVD's of bison - done, anything man to expedite this process.  I was to stand in another queue for the man seated next to him to do something, but since I sweet talked and gave Crist my email address, he took care of this himself.  Now, chart in hand we head off to Critical.  I swear the Sister told me to take Khayelihle to critical. 

Now the bench sitting begins.  If you follow my blogs you know that they are about 85% pictures and little text.  I purposely chose not to take pictures today.  Out of respect for this country and their medical system.  Man oh man did I ever want to take pictures!  I know I can not accurately describe what I saw and experienced!!!!!!

Okay, back to sitting on the bench, I found the end of the queue and like pieces on a game board we ever so slowly slide down when space allowed.  Besides the no picture rule I imposed on myself, I also tried not to look at my cellphone for the time.  Of course there were no clocks in the gigantic hospital.  Who knows how long it took for us to reach the Sister only for her to tell us to go to OOPD.  NOOOOOO this is critical, this is advance Osteosarcoma not a broken arm or leg.

Back we go, circling about trying to find the place again. Greeted our angel Sandra and I went to the table with an Indian man and gave him the chart.  We waited and waited until Khayelihle's name was called.  He told us to go to X-ray.  NOOOOOOOOOO he had X-rays done and here is the CD.  'Madam, we don't have a computer to read a CD."  WHAT?  SAY WHAT !!!!!!!  NO COMUPTER?  THERE IS NOT ONE COMPUTER IN THIS WHOLE HOSPITAL!!!!!!! 

I was stunned. 

So off we go, crazed American with the world's heaviest backpack, giant wheelchair, winding halls, no signage, millions of people, two people whom I can't communicate with and we found X-ray

Sitting on the wooden benches - again - and seeing the queue in front of us, I put out my IPAD and teach Khayelihle how to play games.  He loved it!  When our turn came to give the chart to the woman I explained the diagnosis because the rude man had written that the reason for the X-ray was 'painful leg'.  No dude, remember I told you Advanced Osteosarcoma. I turned in the chart and was told to move to another set of, you guessed it, benches.  This must have taken a long while since we played so many games.  Finally, his turn came and it was so very painful for him having his mother and I carry him to the X-ray table.  I darted behind the wall, knowing that the radiation from this arctic machine was probably lethal.  

They took ONE, 1, one x-ray and we had to move him back to the wheelchair - poor baby.

   

We had to wait for the film to be processed and given to us.  Again I see Sandra who was having stomach issues and was getting an X-ray.  She had to don a hospital gown but put the open side in front and instead of the back.  Wowza.  All this on top of an empty stomach.  I did peek at the time 9:00am and time for a snack.  I had made P&J sandwiches.  Instead of using the grape jelly that my friend sent me from America... poor country they don't have grape jelly... I used strawberry; less they wondered what I was feeding them.

X-ray in hand, chart in hand and we are off to return to OOPD.  I ask the man what I am to do now.  He said to wait for our number to be called.  Number what number.  I was shown that we were #36.  Okay, I thought not bad, not bad at all, I can live with 36.  I asked what number they were currently on.  ZERO.  They hadn't even begun to see people.  

Heaven help us.

Now, I didn't realize that I must stand with my hands on my hips a lot.  The room was so packed that I couldn't even assume my comfortable stance.  The wooden benches that I had been making fun of, I now looked longingly at them - they were stuffed with people all with casts on their arms or legs.



I stuck up a conversation with a lovely Zulu woman and asked her to translate for me.  The mother spoke almost no English and my Zulu is trace at best.  My best guess is that we stood and waited about one and a half hours.  Again, I'm thinking #36 is pretty good, this lovely lady's number was 67.  

The whole day I'm wondering to myself if I'm doing any good at all.  Maybe I was making things worse.  I didn't know and may never know.  The Zulu are so kind, passive and non-aggressive.  I will admit I was a typical American.  Asking a lot of questions and pressing the issue (as sweetly as I could).  I told everyone I was an American Missionary helping this family.  Some ways I think I open doors, but I'm not certain if the same results would have happen without me there.  The mother seemed so dazed and confused, I really don't know if she could have handled the crowds, queues, hallways, English, paperwork all the while pushing that wheelchair.


Now, what happen next is a puzzle. All I know is that instead of the rude Indian man who was sitting at the desk, now a Indian woman who asked that I bring the boy over to her.  She immediately took us down the hall, turn right, turn left, turn right but straight to doctor.  I wonder if our laughing over the fun of playing on the IPAD caught her eye or if God tapped her on the shoulder.







 In this small room was 3 little tables.  Two had doctors performing procedures on people and we were in the center of the room.  An Indian doctor took one look at the leg and said to another doctor, in English but extremely thick Afrikaan, we need to do this, we need to do that.  We were wheeled in front of the doctor, I only assume that were doctors because they were wearing a tie.  No one was wearing a name badge. They didn't introduce themselves. None of the employees wore uniforms.  It was virtually impossible to tell the medical staff from the patients.  They quickly said that there was no need for a biopsy, Khayelihle need a CT span and amputation of his leg.  This all happen in one second. I tried to to think of and ask intelligent questions.  The CT scan would be of the chest and liver.  I asked if the cancer had spread it this were the place it would first go - yes.  I asked how long the hospital stay would be - long.  I asked when the amputation would be - end of the week.

I wanted to cry.

I was very impressed with this young doctor.  He was white, Afrikan, young, spoke Zulu and answered all of my question. Spoke with the mother and try to explain things to her.  We were ushered to the adjoining  room and 4 vials of blood were quickly drawn.  A black woman came in and she spoke Zulu.  I asked her to explain everything to the mother because she was totally and completely stone faced.  No emotion.  If I had just heard that they were cutting my son's leg off in a few days I would have reacted in some way - most likely hysterically.

All the while the blood was being drawn they put a port in his arm and then held each vial under the port while the blood dripped or occasionally squirted in.  Blood was pouring everywhere, all over his arm, the wheelchair, floor.  Filled one vial, set it upright in the tray and then held the next under the dripping blood.  

I know nothing about cancer but it worries me that he is so very, very thin and also when the doctor poked and prodded his abdomen my friend was in so much pain.

I told the Zulu woman filling out forms that I googled osteosarcoma and she laughed at the thought of it all.  She said Americans know so much about their bodies and health.  I pulled out my IPAD and asked if there were Wi-Fi, again total laughter at the mere thought.  There were procedures  going on next to us and I saw more than I wanted to.  Guess there are no HIPPA laws in South Africa. All this while I must have been ashen.  I had been standing for probably 3 hours now - with the heavy backpack.  The nice Zulu woman said I could wait outside if the blood bothered me.  I said that I was upset for the family.  I did everything to keep from bursting out in sobs.  

I hate cancer.  I hate how much pain my little friend was in.  I hate what he was going through.  I hated everything about this day.

Then the wonderful doctor lead us back to X-ray, but only so he could drop off the order for the CT scan.  He pointed to the doors to admission and said to go there.  

Next thing you know I'm dealing with the worst person of the day.  Another Indian woman.  Now mind you, I'm the only white person I saw in the sea of humanity, oh except the great doctor.  R. K. Khan is a enormous government hospital.  Mostly every employee is Indian and speaks English, I would guess 60%patients are Indian and 40% were Zulu, who speak Zulu.  Not understanding that I was admitting this innocent child to the hospital, last thing I heard was that he was getting a CT scan.

From admitting we were told to go to the 4th floor.  Remember I don't  know where I am, where the lifts are, again I ask and ask and ask more question.  We find the 4th floor, no reception, no nursing station.  Nothing but a ward straight out of Gone With The Wind or at best M*A*S*H.

This picture is very close except the beds had no real sheets, or blankets, or pillows and no foot board.  No bed side tables.  They did have a little bell to ring if they needed the Sister.

Khayelihle was told to get into the hospital gown and into the  bed.  Now, his mother freaks out.  I was too.  There were 10 other beds in this room, 5 had men in them.  One young man named Matthew, who had just gotten out of theater (surgery) was translating for me.  The mom didn't want her son in the hospital, she didn't want his leg cut off, she wanted her traditional medical man, a muti.  Matthew tried to explain that this was cancer, and since his leg has looked like this since July that the cancer could be spreading.  

The mom changed his clothes, put the outfit that I had purchased for him to wear today into my backpack, we hoisted him into bed, onto a blanket that covered about 2/3 of the mattress and I found a sheet to cover him with.  No pillow and I know he was freezing because he is so very thin and always cold.

I offered her my phone to call someone.  I offered food.  I kept asking for a social worker or someone to speak with the mother.  Oh, a social worker has to be ordered by the doctor and she will come but it might take days.  I kept asking when the CT scan would be... days from now.  I asked and I asked and I asked hoping and praying that something positive would happen.  Nothing.

Then the mom said we were leaving.  W H A T??????????  I didn't want to leave this child I've know for a week - where were we going?  What!  

Okay, I called Harold to come pick us up but he was busy and told me to take the public taxi system.  Geez at least the price is right 23 Rand to get home vs. the 300 Rand to get here.

As we were walking out, a woman? nurse? Sister?  who know what her role is was yelling at us through a window. Had the mother signed the form for the CT scan?  We walked back inside and I asked how would we know... the trusty chart would know.  NO ONE could find the chart.  Now remember there is no computer, 60% of the personnel don't speak Zulu, we are leaving a scared 13 year old boy with no identification - his only hope is the chart, which are left on the foot of every one's bed and NO ONE can find the ding-dang chart.  We wait probably one and a half hours and then it appears.  Yes, the proper paperwork was signed.  

Matthew, my translator - straight from surgery - says the mother thinks the CT scan is surgery.  He also asks to borrow my cell phone to call his mother. Of course you can sweetheart, talk as long as you want. While waiting at the lift (elevator) I ask a black woman if she speaks English, yes.  Can you please tell this mother that a CT scan is kinda like an X-Ray.  Thank you very much.

Mom and I walked in the rain to the taxi rank - got to the hub, Pinetown.  I said 'Pep' and she nodded.  I had told her that I would buy Khayelihle what he needed in Pinetown.  At Pep she picked out 3 pair of underwear, 2 pair of socks, 1 pair of pajamas, 2 tee shirts = 

192 Rand  ($21.33)

Next on the street we bought two washcloths = 10 Rand  ($1.11)

In the grocery store we bought toothbrush, toothpaste, Vaseline, and body soap = 50 Rand  ($5.50)

We sat on the ground in the store as I put the contents of my backpack into the Pep store bag and she put all the new clothes and hygiene items into my backpack.  The boy would need something to store his possessions in the hospital.  I gave her taxi fare home and 100 Rand to get back and forth to the hospital.

I gave her a hug and she was off to Ntshongweni and I was off to Hillcrest.  

I will go visit my ill friend in the hospital and bring him something to do.  No TV, no books, that poor child right now is lying there all alone with nothing and will be there for an indefinitely length of time all the while knowing that major life altering surgery is looming ahead of him.

Now, I wish if could take his place.  I would be fine in America with my leg amputated from the knee down.  I could still work and get around fine.  The future of this 13 year old, who is in the 5th grade was already grim... and now this.

To add insult to all this misery... his birthday is the 23rd and Christmas is in two weeks.

My fervent prayer with all the children at the Bible Camp, (who made him get well cards), is that if he doesn't have a relationship with Jesus Christ, his Lord and Savior that through this tragedy he will come to know and feel the love of Jesus.  I gave Khayelihle a Bible on Sunday when I went to visit him - may he read it and learn about Christ Jesus our Great Physician.

Jesus referred to himself as physician twice:

Luke 4:23: And He said to them, “No doubt you will quote this proverb to Me, ‘Physician, heal yourself!” 

Matt. 9:12-13: But when He heard this, He said, “It is not those who are healthy who need a physician, but those who are sick. But go and learn what this means, I desire compassion, and not sacrifice, for I did not come to call the righteous but sinners.”

***All money used to help my friend was donated to me to use as I see fit from loving Christians at Christ Lutheran Church, Phoenix, Arizona***