Chapter 13: Now what?

Last Thursday Nomsa ran away from the TB Hospital. She sent me a text, which read “Janine, I am so sorry I disappointed you.  I wanted to stay, God knows I did, but hey, the devil caught my weakness.  I am on the road and I just don’t know where I am going because I have no money.”

I called her immediately on the phone and found her sobbing, sitting outside a pizza restaurant in Manzini.  She told me that a nurse left a note on her bed saying that her tests had come back positive and that she would be moving in to an isolation ward the next day.  WHAT!?  Why a nurse would do such a cruel thing I will never know, but she did, and at 6PM Nomsa ran out and under the barbed wire fencing.  She could walk to Manzini, but how would she get to her very rural homestead without money?  There was only one way.

Through an act of divine intervention I was able to contact some friends who were closer than I was and they got to Manzini, spoke with her and between many phone calls and physical hugs we were able to convince her to go back to the hospital, even just for 24-hours until we could all meet in the morning to discuss what happened and what it really all meant.  In fact, these “angels” literally snuck her back IN to the hospital.  One they won’t soon forget. 

My mom used to tell me that everything is better in the morning, and she was almost always right, but I am not sure that was true in this particular case.

I posted a prayer request on Facebook that same night and said if anyone wanted to send her an email with a message of hope to send it to me and I would take it to her in the morning.  Within 12 hours I had 26 emails from all over the world to print out and take to her.  It was a wonderful site to see our printer pumping out words of encouragement to, in most cases, a total stranger.

When we got up the next morning, Chloe and I headed to the TB Hospital to see if we could convince Nomsa to stay at the hospital until her results came back in 5-6 more weeks.  When we arrived we learned that the doctors were going to tell her that she in fact does have XDR-TB and that she would be moving in to an isolation room (ideally alone, but with space restraints she would have another XDR-TB patient with her… which kind of defeats the purpose of isolation).  The BBC/PBS film crew was there to film the news and her response (I want to add that these people are awesome and are doing a wonderful job of telling a horrific story that must be told if the western drug companies are going to help). 

 

It was heart breaking, to say the least.  Chloe and I had to stand back and watch because we couldn’t be in the film shot (it would complicate the story) and so we stood at a distance and wept with her and for her as she was told the bad news.

While the doctors didn’t tell her this part, the truth is that no one has lived with XDR-TB in Swaziland with the treatment that is available here.  They/we all have the hope that she will be the first XDR-TB patient in Swaziland to be cured … or healed.

The camera stopped filming, the doctors moved on to the next patient and we stayed behind to hold her and love her. She told me that she would not spend one more night in that hospital and I couldn’t blame her, but where would she go? What would she do?  If she left the hospital she would die. If she stays at the hospital, she will die.  Its all a matter of time, which of course is true for all of us isn’t it?

(Go to http://janinemaxwell.blogspot.com/2013/07/nomsa-confirmed-to-have-xdr-tb-and.html to read about the miracle that happened with that woman BECAUSE of Nomsa’s intervention and care).

Here is the difference.  If she stays at the hospital she will be in an isolated room, with no access to other patients in the main wards (where she has had a wonderful ministry).  The treatment is most likely to make her deaf, she can become psychotic along with other side effects of these highly potent drugs.  And then one day, in the next few months or year, she gets sick, and dies.  If she goes home, she has no one to love her, care for her, there is no food, there is no electricity, there is no hope, but there is freedom and she can choose to stay or not stay on her treatment there.

I don’t honestly recall a time in my life that I haven’t had multiple solutions to any given challenge or problem, some of them better than others. But honestly, I don’t have one for this one. I can’t solve this.  I can’t fix it.  But what I have learned is that I  am not supposed to fix it. I am to leave it all at the foot of the cross and watch what the Lord does with it.  Easy?  HA!  No. I wake up at 3AM and think, think, think until my brain cramps.  Then I pray for peace, and it does come.  I don’t mean to make it sound easy or that I am some Super-Christian. I am not. I find myself angry, frustrated and cussing!  None of those things seem to change the situation.

Today I went in to Chloe’s room to say “good morning”. It is only one week until we pack up and travel to Taiwan where she will spend the next two years finishing High School.  She was writing a blog when I walked in.  I encourage you to read it at:  http://chloemaxwell.blogspot.com/2013/07/sitting-in-silence.html.

I was blown away.  I was speechless. I am thankful for all that the Lord has brought us through in the past year even if it was for the key insights that Chloe has been able to articulate in her blog. It has been a hard year for us all, but Jesus has always been with us, He has never left us nor forsaken us and He will not leave us now. He will not leave Nomsa now. He will not leave you now, no matter how bad things seem. That is a promise from Him, not me.

On Friday Nomsa asked the doctors for a five-day pass to go home and think, pray and process.  I gave her Manna Packs so that she had healthy food to eat while she was there and didn’t have to make poor choices in order to eat.  She promised me that she would not be involved in any activity that could potentially infect another person with XDR-TB or HIV.  I believe her for these five days.

I called her on Saturday to tell her about the newborn baby whose life she had helped save.  Our friends visited her on Sunday to check in and she says she is going back to the hospital this week. I called her just now as I was writing and she says she is listening closely for God’s voice, a voice in the wilderness for sure.  She told me she had two more days, and that she knew He would speak to her. I know He will. He is El Roi, the God who sees us all.

I don’t know what will happen next.  I couldn’t have predicted any part of last Friday, but I am thankful to be a tiny part in His HUGE plan and to see His mighty hand so clearly.

Thanks for reading and for praying with us.  Our prayers are not going unheard – just read Chloe’s blog to really believe that.

Janine

Chapter 12: The real truth. What would you do?

Sitting 5 ft away, down wind from MDR-TB patient outside.

It’s been several weeks since I last wrote a Nomsa blog.  It is not because I haven’t gone to see her on a regular a basis. It is not because there is nothing to say.  It is not because the news it’s all good so there is no “story” to tell. It is simply because I just don’t know how to write what I need to write.

My head and my heart hurt.

My learning curve on Tuberculosis (TB), Drug Resistant Tuberculosis (DR-TB), Multi-Drug Resistant Tuberculosis (MDR-TB) and Extremely Drug Resistant Tuberculosis (XDR-TB) has been steep to say the least.  In fact, there is so much unknown and so much under study that answers seem to change depending on who you ask and when you ask, or at least that is what I thought.

Sadly, I think I wasn’t getting a straight answer because no one had the heart to give one to me, until I met the Producer/Director of a Documentary film being done on MDR-TB. She is a reporter. She has investigated and learned. She speaks the truth.  The truth sucks.

The doctors are 99% certain that Nomsa has XDR-TB.  All patterns of testing are pointing directly there and they are only waiting for the last DST test results to confirm it.  When this woman asked them directly about Nomsa last week they said that they would move her in to an isolation ward now if they didn’t have someone in there with a highly infectious case.  Nomsa’s sputum is not infectious right now, or at least it wasn’t when last tested, but that doesn’t mean she won’t be infectious tomorrow.

What is the prognosis?  Can’t get a direct answer from a medical professional, but the Documentary film maker says there has been no one survive in Swaziland with MDR-TB.

What happens if /when she gets the DST results and they are negative? She moves into an isolation room, until she dies or until she demands to go home and die.

Can we build room for her at Project Canaan that would be safe for all of us and safe for her? Yes.  Will she get sick there (from chicken pox or the flu or a cold) and have to be rushed back to the TB Hospital in the weeks/months to come?  Yes, unless she is healed (which I do believe is possible if it is his will).   Are there risks for those of us here?  Yes, but can be calculated and mediated by education and government support.  Will she need an injection every day for the rest of her life along with dozens of pills? Yes.  Can we facilitate that? Yes. Will it be easy?  No. Is it wise?  Each of you will have your own opinion.  What would you want if you were Nomsa or if she was your daughter?

Poster at the TB Clinic explaining transmission prevention.

To say I have lost hope would be untrue because I believe in a God that is bigger than any level of Tuberculosis.  To say that I am hopeful would be an overstatement. If her test comes back negative and they pack her in to the isolation room, what do I say?  What do I do?  What would you do?

Truthfully, my heart is breaking. There is a lot going on in my world these days that is hurting my heart, and this is just one of those things.  But I know that El Roi sees me too and I pray for His mighty hand of protection and healing.

That is all for today. It’s Tuesday, so consider this last Wednesday’s blog.

Janine

PS – read janinemaxwell.blogspot.com from last Saturday and you will see what Nomsa was doing to save the life of a pregnant woman at the hospital and her unborn child. There is no question that God is using her in a mighty way and has her there “for such a time as this”.  I am eternally grateful to know this remarkable young woman.

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