Chapter 11: bad news week. He will have to make a way.

 

Today is not Wednesday, it’s Thursday and I just haven’t known what to write after a few silent weeks and bad news yesterday.

Let me start by saying that I began my day on Wednesday taking a young girl to the hospital to seek pregnancy care.  According to her records she was almost 3 weeks overdue and went it to labor nine days ago, dilating 2 cm and then stopping.  So many things around this girls story seem untrue, but we have been trying for weeks to navigate through truth and lies with layers of grace in-between.  The doctor concurred with the information and decided to induce the girl today.  We were to drive her home, find childcare for her two other young children and help her get organized for a day away from home.  How hard could that be?

As we drove away from the hospital yesterday I got a call from Nomsa … the dreaded call.  Her culture came back and it is positive. Not what we had all hoped and prayed for.  I was shocked really, but then again, not really.  The doctors had tried to prepare us all for what they had feared (and expected) most.  I could hardly understand what she was saying on the phone other than that she wanted to die.  We were only ten minutes away from the hospital so with pregnant woman and her 14-month old baby in the back seat we went straight to the TB hospital to try to calm/encourage/love Nomsa. 

Audrey Wright, one of our summer interns, was with me as was Bongiwe from the Baby Home.  None of us had this in our plans for the day.  It was awful. When I got the call I was parked in downtown Manzini and fell apart. I knew that tears would not and will not help solve this, but they came out unsolicited.  After a bit it was time to suck it up and head to the hospital to make sure that Nomsa did not take her own life, or run away.

But what could I say to her, really?  What words are there to encourage someone who has possibly just been given a death sentence?  Yes, there are words of hope from scripture that should be the only thing that I use, but my human side just didn’t want to face her at all.  So, we did what any good friend would do, we stopped and bought a Black Forest Cake and some French Fries to bring with us.

But really.  What would we say?

Here is the gist.  Everyone around her in the ward has either died or has been discharged.  Nomsa is on “month #22” of treatment for Multi-drug resistant Tuberculosis and is not getting better (although she looks perfectly healthy to look at).  Now they have to run ANOTHER test that will take ANOTHER 8 weeks to find out if she has become Extremely Drug Resistant (called XDR-TB) or if her body is just exceptionally slow at healing from the treatment (not likely according to her long treatment).  Either way, she has many more months of treatment at the hospital ahead and I don’t think she is willing to do it. 

When we arrived we hugged and cried.  Then it was time to talk the hard talk, but she wasn’t in the mood, and neither were we.  So we said very little. Instead I spoke to the nurse and then finally the doctor to try to understand where we are and where we are going.

Here is the bottom line. She has a long haul ahead and frankly the odds are nowhere near in her favor.  If you Google “life expectancy with XDR-TB” it doesn’t paint a good picture (plus it is really hard to even understand).  She knows what the future looks like because she has watched so many people go down that path and not return.

The good news is that she is a remarkable young woman and knows that God is with her each and every day. She just doesn’t want to be there, and I get it.

My fear, honestly (and she will not be reading this blog any time soon), is that she will quit. She is losing her hearing already and some eyesight.  The psychosis that comes with the medication does not help her understand that running away “home” (to a mud hut with no food, clothes, water or support) is a death sentence.  And if she does run away, how many people will she infect before she is too sick to walk.

Sorry that this blog does not have a happy ending.  For anyone reading this I call for your prayers for Nomsa and for us.  There is a way that we could help her, but it would take a lot of work, negotiations and some risk. It is too complicated to explain and frankly we are still thinking/praying it through.

Nomsa has promised me that she won’t run away or commit suicide for a week while we speak with doctors and see if there are any options available that are viable and even remotely practical.  I pray that she will keep her commitment and I believe that she will.

When I turned 25-years old my cousin Kim through a birthday party for me and we all wore tags that said, “Where there is a Willis, there’s a way!”  My maiden name is “Willis”, and she was poking fun at my determination. J  I fear that this time “Willis” can’t find a way. But even as I type that I am reminded of the song that says, “God will make a way when it seems there is no way.”  I am clinging to that absolute truth today.

Janine

PS – the girl has not given birth yet.  Maybe she will have her baby on Chloe’s birthday… tomorrow, July 5^th.  Happy birthday Chloe!  xoxo

Chapter 10: Seizures and strokes are just a part of life with MDR-TB

Last week Baby Rahab (living at the El Roi Baby Home) was not doing well. She started vomiting and had bad diarrhea.  Within a day she needed to be hospitalized because she became so dehydrated and in the end we learned that she had pneumonia.  She has been in the hospital for almost a week now.

 

At the same time Rahab’s mother was in the TB hospital fighting for her own life.  She also took a bad turn last week and by Friday night Nomsa was afraid that the lady wouldn’t make it.  At 11PM the mother started to shake and had seizure after seizure, scaring Nomsa terribly.  She tried texting me to ask me to pray, but I was asleep so she prayed on her own.  A short time later the mother had a stroke and was left unable to move on her left side (leg, arm, neck, head). Finally she went to sleep and slept throughout the day on Saturday, only waking on Sunday morning.

We had a small team of women volunteering in Swaziland last week working on designs for knitting, crocheting and jewelry designs that we can have women make at the Khutsala Artisans Shop at Project Canaan. One of our long time volunteers is Becky Fern and she had sent some crochet materials for Nomsa to get started with.  On Sunday I took Becky and Eleasha Bailey to meet Nomsa, visit Rahab’s mother and do a bit of crocheting.

When we arrived we saw Rahab’s mother lying on the floor (they had put her mattress on the floor when she was seizing so badly).  She was hooked up to an IV and clearly couldn’t move the left side of her body or turn her head at all.  It was so very sad to see her naked, with her skin and bones body lying under a wool blanket, waiting to succumb to a horrific death.  We shared words of encouragement through and tried to smile big behind the mask so that our eyes showed her love and joy (since she couldn’t see our mouths).  We gathered together to pray for her and Becky spoke words of healing and peace over her.  Then we went outside to talk.

I wanted to speak with Nomsa about the very real possibility that her next Culture test may come back POSITIVE.  It was such a huge disappointment (train wreck) when she got the positive test last time and she knows that another positive means that her Multi-Drug Resistant Tuberculosis has become Extremely Multi-Drug Resistant Tuberculosis (see http://en.wikipedia.org/wiki/Extensively_drug-resistant_tuberculosis), which very few people in third world countries can survive.  If she is positive, it likely means life in the hospital or going home to die.  How does one prepare for this kind of news?  She didn’t want to talk about it, and neither did I, but we had to.  We had to have a plan (at least psychologically) so that she didn’t just decide to quit, run away and “live life” until she died (leaving a wake of destruction behind her) if her test results come back positive.

The conversation was mostly focused on God’s plan for her life and that while her plan was to leave the hospital maybe HIS plan was to use her there.  Afterall, Baby Rahab may not be with us if she hadn’t intervened and told us about the baby.  She agreed, but like us all, wants her plans to be brought to fruition. We had a good visit and Becky was amazing at teaching Nomsa how to crochet. She is making herself a blanket and has time to work on it while she waits for her news.

We left that hospital and headed for another hospital to check on Baby Rahab.  As of today, Rahab is responding well to the antibiotics and is gaining weight back. She will be 12-weeks old tomorrow and is just 6.1 lbs today.  When she hits her target weight of 6.4 lbs we can bring her home.

As we were driving back to the farm I got a call from Nomsa. She was screaming and again, I thought the worst. Surely the mother had passed away.  But no, it was screams of joy. I put her on speakerphone and we could hardly understand what she was saying.  After she calmed down she spoke again and said, “Janine, it is a miracle!  I have witnessed a miracle!  I was down on the ground trying to feed the lady when suddenly she moved her left hand.  She actually reached up and touched me with her left hand!  Her whole arm suddenly moved and I witnessed a miracle today!!”.

Nomsa was beyond excited.

I said, “Now Nomsa, aren’t you glad you are at the TB Hospital today?” 

And believe it or not, she said, “YES!  I am SO HAPPY that I am here an nowhere else!”. 

Why?  Because she would have missed seeing the hand of God at work.

This is a long hard journey, but I continue to be amazed by people I meet and their will to live.  I pray for complete and total healing for Nomsa and Rahab’s mother. Imagine if they could one day both be discharged and come and work at the Khutsala Artisans Shop on Project Canaan.  Now, that would be cool.

Janine