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Saturday, July 26, 2014

A Time of Transition

Thursday night, we had the pleasure of spending time with some of Ken's family.  Jennifer and Bryan (Mom and Dad Troutman) are in Raleigh for a few days visiting relatives in the area.  Abby (Ken's sister) and her husband, Craig, were just passing through.  We enjoyed grilling hamburgers and hot dogs in spite of the pouring rain!

Robin was able to come over and spent several hours in conversation.  She is still in a great deal of pain, but does feel that the parasite treatments are working.

Abby and Craig will be leaving soon for a two year missionary assignment in China.  You can follow their work by signing up HERE. Ken's other sister, Sarah, is already in China with a missionary team.  It amazes me how GOD has worked to bring this precious family into our lives.  Robin has always had a heart for the people of China.  In 10th grade, she chose Watchman Nee as her missionary biography report.  It was on our visit to Florida the following summer that David's dad revealed to us that Watchman Nee was a relative of ours.  Since that time, Robin's interest in her Chinese ancestry has grown.  I will share more on this subject later.

Just a quick update on Robin's condition--insomnia and pain are the biggest concerns currently.  She has been on some of the pain medications for well over a year and her doctor wants her to start reducing the dosage.  This causes side effects such as irritability and migraines.  Managing this along with the pain she has from the Lyme is challenging.  My resolve is to be patient, loving and kind--no matter what is said or done.  That is most difficult when I am tired, but GOD has given much grace in this area!  So thankful for HIS grace!

We received an email from Robin's doctor on Friday and the blood tests done last week indicate that Robin's immune system is in decline since the last time it was checked.  This moves us one step closer to becoming a candidate for the IVIG procedure that I mentioned in a previous post.  We should know more in a few days.

And Then...
The summer of 2007 was busy, exciting and confusing!  Shortly after graduation, Robin was back in NYC with her youth group, helping a church on Long Island.  The group "sparkled" their way through the city, making great memories.

Robin remembers having some back pain on this trip, but was able to keep the pace.

In mid June, we travelled to Roanoke for my niece's wedding.  This was an exciting time for our family, as Riley was the first of the cousins to "tie the knot".  They had a beautiful venue at a mountain top winery.  What a gorgeous view!

My recollection from this trip was that Robin just wanted to sleep.  Looking back on it now, this is when I could sense a change in our daughter's personality.  Always outgoing, she was beginning to turn inward.  It is a change that did not occur overnight, but gradually.  She still enjoyed being around people, but was spending more and more time alone.

As the summer progressed, we saw more and more changes in Robin's behavior.  We thought she was excited about going to Bob Jones University in the fall, but she was making no effort to get her things packed.  David and I worked during the day and on many days we would come home to find her still in bed.  She said the pain was horrible, but it was not localized.  On other days, she would get up and clean the house or have dinner ready when we got home.  Nothing made sense.  David and I concluded that Robin was working through some emotional issues that, in our parental wisdom, all teen agers went through at some time or other.  Robin had always been very steady and quite mature for her age.  This had to be the problem.  We decided to give her time to sort things out.  We knew she would talk when she was ready.

Our church had a special Sunday evening service in July to celebrate our freedom in Christ.  There were fireworks after the service and ice cream and watermelon!  Robin's normal Sunday night routine included after church fellowship with the other young adults.  There was no way Robin would miss a special night like this! But, she didn't even make it through the service.  We were concerned, so we went straight home ourselves.  She was lying on the floor crying and rolling from side to side in extreme pain.  We were ready for her to see a doctor.  But, the pain would subside, so we didn't go.  The rest of the summer was marked with these unexplained pain attacks.  They would come and go and she had a hard time explaining what it felt like.

Robin seemed to rebound somewhat in August.  We were able to take the family vacation we had planned for mid-August.  Cincinnati, here we come!  This is my favorite picture from that trip!

Cincinnati Zoo - 2007
Back home and just a few weeks before the first day of college, and Robin has done NOTHING to prepare.  I was a complete nag for about a week and then I surrendered.  I did not want my daughter to feel that we were pushing her to go away to college.  Maybe she was having second thoughts about leaving home.  Maybe she wanted to stay home and attend college locally.  Maybe she just wanted to work.  When I asked her these questions, she was adamant - "No, I am going to Bob Jones!"  

After what seemed like an endless summer of tug of war, Robin packed her bags and was ready to leave when the day arrived.  I was relieved but troubled.  The summer had been a roller coaster of emotions.  One day there was pain, the next day there seemed to be none.  There was something bothering Robin, but she was convinced that God wanted her at Bob Jones.  So off she goes......

Tuesday, July 22, 2014

Return of the Razor Blades

Can you imagine how that must feel?  "It feels like razor blades cutting my spine."  That is how Robin describes the pain when she is in a flare from treatment.  That is what she is feeling now.

Last week gave us some answers, but the return of the debilitating pain in the spine has overshadowed everything else.  The results of the IVP conclude that Robin does not have kidney stones.  We are thankful for that!  

Last night Robin began the second phase of the parasite protocol.  This one consists of Ivermectin (targets roundworm) and Pin-X (targets pin worm).  Her doctor's notes for this phase read:

"...the dosing listed is the full dose which potentially will be tolerated fine but we do have patients with variable responses to these medications and those who are very sensitive may need to start with 1/2 the full dose or even less.  You can use your judgement as to how well you are feeling at the time, starting with a lower dose if you feel this is needed, but try to work up to the full dose as soon as able."

A text from Robin at 4:30 this morning confirms that we will need to reduce the dosing for her tonight.  This phase is for fourteen days.

Please join us in prayer for:

  • Robin to have strength to endure the pain and nausea
  • David, Ken and I to have supernatural insight of how to comfort Robin
  • the medications to work
  • peace in the midst of the storm
Today, I find comfort in this song by Ron Hamilton:

O, Give Thanks to the Lord

July 5, 2014 - smiling through the pain

And Then... be continued when Robin is more stable.

Friday, July 18, 2014

Consequences of An Unhealthy Immune System


We made it to Friday!  Our prediction for this week was one of herxing and debilitating pain.  Unfortunately, we were right.  Robin experienced some nausea from the Biltricide, but the most notable side effect has been the increased pain in her back and neck.

Today she will have a blood draw to check her immune system function.  Our doctor is monitoring this to see if she is a candidate for a procedure called Intravenous Immunoglobulin (IVIG).  After years of fighting the infections in the body, the immune system, understandably, needs a break.  When this happens, the parasites and unfriendly bacteria go on the offensive.  If Robin's lab results indicate an under-functioning immune system, our insurance company should approve her for this treatment.  We were told that each round of this treatment costs roughly $15,000.  There is no way we could afford that without insurance coverage.  Robin is quickly approaching her 26th birthday, so it is imperative that we stay on target with getting the documentation necessary for our insurance to cover this procedure.  Our doctor has been told of Lyme patients making amazing strides in their treatment after having this procedure.

So, that is my prayer request to all my readers--if it is GOD's will, the blood tests will indicate that Robin is a candidate for this procedure AND that our insurance company will approve her for treatment quickly!

And Then...
Let me remind you of the date--it is May 2007.  Think back with me to that time.  What pharmaceutical product do you recall seeing during every commercial break while watching TV?  I am talking about Gardasil.  

Robin was urged to have this vaccine every time she went to see a doctor.  It was presented as mandatory, that I would be negligent if I did not consent for her to get this vaccine.  I read what was available at the time and I had some questions.  Robin did not fall into the subset of girls who were at greatest risk, but the pressure from health professionals was intense.  David and I discussed the issue and decided to get the advise of someone we trusted, who was a doctor in another state.  Her response was that Gardasil is a good product and that her own daughters were having the vaccine.  After much discussion and prayer, we decided that Robin should have the vaccine.

The Gardasil vaccination completes the triangle of elements that have made our daughter so sick.  I want to share with you the timeline that our doctor and his staff have helped us to develop.  It is easy to just accept the consequences of events that you would repeat, such as going on a mission trip to Honduras, or a camping trip with your father.  It is not so easy to accept the consequences of a decision made, based on aggressive marketing of a pharmaceutical company and the negligence of government agencies that failed to do comprehensive testing before recommending the vaccine for ALL girls ages 9-26.

Check out some stories of girls who have suffered due to this vaccine.  Many of them are similar to Robin's story.

But, as I said, there are three events that put us on this long and arduous journey.

Summer 2006 - Trip to Honduras - swam in unclean water, pulled leeches from abdomen after swimming, rash and low grade fever initially, neck and back pain on-going

May 2007 - Father/Daughter camping trip - over a dozen ticks removed, low grade fever and fatigue initially, neck and back pain increasing in intensity, all over muscle and joint pain

May - Dec 2007 - Gardasil vaccinations - our theory is that because her immune system was already compromised from the first two events, her body had an adverse reaction to the components of the vaccine.

The immune system--so important for our bodies to function as God intended.  When it is damaged, we suffer physically, emotionally and spiritually.  As Christians, we are not immune to making unwise decisions.  If we are not living in a way that supports a healthy spiritual immune system, we are more prone to bad decisions.  Was my immune system healthy during this time frame?  My prayer journal would indicate that I was too busy to spend quality time in God's Word and prayer.  I deeply regret this!