Pre - diagnosis

Laura was positively diagnosed with MLD on June 28, 2011.  Months before we had planned to vacation at the summer house of my father in Bar Harbor, Maine. We had just started our drive and were not even at the end of our street when we received a call from Dr. Wenger that the test was positive for MLD.  At last we received a final diagnosis.  Now we knew what we were dealing with – now we could move beyond our doubts and worry.  In a way, this information was a relief. Amazingly, we all took this information in stride and pledged to have a great 10 days in Maine and points along the way.

Pre-diagnosis is a broad story on its own.  Knowing what we know now helps us explain the past 6 years +/-.  This testament will not go into all the little details of our experiences over the previous 6 years, though it will touch on some general observations and trends which we observed as well as discuss some events following the first trip we made to the emergency room.

I woke up at 5:00 am on April 18, 2011 and followed my normal routine of shower, shave, and dress for work.  Since I had extra time before getting together with friends at 6:30 am, I went out to breakfast and spent most of my time journaling about some of my observations and concerns about Laura.  After I put my feelings on paper I realized the critical nature of what Laura was experiencing and I was quite scared.  This day Laura would be home by herself since Darlene and I would both be at work.  Laura did not have her class at the community college so I was not quite sure what she would be doing. 

When I got together with my friends at 6:30 I talked about some of my observations and they all mentioned that I should take her to the emergency room at once – that her experiences were not typical of a 21 years old girl.  I arrived at work at 7:45 am and called her pediatrician though I was unable to have a direct conversation with her.  The associate asked me if she could take a message – and after a brief pause – I unloaded my story on the associate.  Maybe she doesn’t often hear from fathers or maybe the story triggered some concern on her part. Though most likely some combination of these factors compelled her to put me on hold as I heard her walk down the hall and knock on the door where the doctor (Dr. W.) was already seeing a patient.  5 minutes later she came back on the phone and explained the Dr. W’s recommendation was to immediately go to the ER.  Now I was really anxious. 

Two weeks before this day, Darlene took Laura to the ER because we had observed  behavior  uncharacteristic on a 21 year old college girl.  What we had observed was not unique, but something that had been progressing over the previous months. Some 6 hours later they came home without answers, or should I say answers that didn’t help, namely,”… your daughter is not under the influence of drugs or alcohol, and, maybe she’s just tired and irritable.”  A few days later, Darlene had a 1 hour phone consultation with Dr. W. discussing observations, thoughts, a lot of questions and  few answers.

So the secondary conversation with the physician’s office on April 18, 2011 was another red flag.  One observation I had shared was that Darlene and Laura were walking in the neighborhood on a dry, clear and warm day in early April and fell twice within 2 minutes, without being triggered by a crack in the sidewalk  or hole in the ground. 

At 8:15 in the morning I left work with the intention of coming home and convincing a 21 year girl to go to the ER.  I knew this would be challenging so as I was driving home I devised a strategy.  First, I called Darlene and explained to her what had been going on this morning and that I was on my way home to take Laura to the Emergency Room.  Secondly, I called Laura’s brother, Tim (age 24) and asked if he could stop by the house and help with a tag team type approach. 

When I got home at 8:45 am Laura was in her room and asked what I was doing home.  I told her that I came home to take her to the ER – which obviously met with resistance.  We both positioned ourselves for a serious debate which included a lot of “….I’m over 21 and you can’t make me…”.  And Laura was right.  So we played this “ping pong” debate for some time until Tim came home.  Thank God.  Laura has always deeply admired and respected her older brother.  Tim shared with Laura that it’s best to check things out – that’s what the system is set up for.  It may be nothing or something, either way it’s best to check. 

This statement from the brother she respected was a huge help, but still not quite enough.  Tim went on to share some personal stories about himself which neither of us knew.  How he had a medical situation also and went to the doctors.  Relief and healing came quickly once he had the correct treatment.  Tim’s personal stories did not close the deal either.  

Laura started to argue from a different perspective.  Now the arguments were “…there’s nothing wrong with me, just leave me alone, there’s nothing wrong with me…”.  Suddenly I received a nugget of wisdom. If I wasn’t absolutely desperate and committed to taking her to the ER I could have let this idea pass:  “OK Laura, I hear what you’re saying.  Prove me wrong.  I’ll give you $ 100. If we go to the ER and they say you are free to go home.”

Money speaks.  Especially to a college age girl. And this $ 100 was no exception.  This $ 100 said things I could never have articulated so clearly. Namely, it is financially beneficial for me to go to the ER.  I’ll have an extra $ 100. And I’ll prove to my Dad that he’s worried about nothing. I’ll have a compelling reason for him to leave me alone.

Just as we made the agreement to go to the ER, Darlene arrived home from her hospital job and we all went together.  The drive to the hospital seemed like a repeat of the trip 2 weeks prior, only this time it was daylight.  On the way we stopped at Eddie’s grocery store to buy some groceries and sandwiches.  After about 10 minutes we all walked up to the cash register and Laura began walking peculiar – her back was arched backwards so much that I thought she would fall backwards.  I positioned myself right behind her and was ready to push her forward if it became evident she was really going to fall.  Fortunately she kept her balance, thanks to her getting close enough to the cashier so she could hold on to the register belt which helped her regain her balance.

After checking in Laura was taken directly to a room, the attending physician arrived and went over some basic questions.  When the attending physician left the room, I excused myself from the room also, had a brief conversation with her and let her read the 4 page journal entry I wrote that morning about my observations, and worries, about Laura. 

One of the standard, and very important questions the ER asks incoming patients is “Why are you here” or “What brings you in”? I’m sure they often here’ “My doctor told me to come in”.  I’m also sure that when parents bring their adult children because of their observation of erratic and unusual behavior their immediate thought may be the influence of drugs or alcohol.  That appears to be what occurred a couple weeks before.  However, the combination of both parents bringing their adult child in, the 4 page journal report, a referral from her pediatrician, and me pleading with the doctor to call her pediatrician and confirm this (which she did), was instrumental in pushing Laura’s case to the top of the list.  As Laura was in the room, I could hear, and every once in a while see, the attending physician reading the journal notes, on the phone with Laura’s pediatrician, and searching on line for information about what might be causing the observations I had written about.

While all this was going on, another doctor happened to come in while Laura was walking to the bathroom. He witnessed that her feet pointed inwards while she was walking and noticed a slight arching of the back. He cancelled the order for the CAT scan and went immediately to a contrasting MRI.

One half hour later this same doctor came back in and, with a little bit of an ashen face, said “..the MRI shows significant white matter in all regions of the brain…” and “…. Laura will be admitted for further tests and observation.”  He indicated that this may be in an indication of some type of dystrophy.

In the fall of the previous year (September to December 2010) Laura did not attend the community college. The semester before that (January 2010 to May 2010) Laura had attempted one class but dropped it within the first few weeks.  Darlene and I had been having an increasingly difficult time motivating Laura to take classes at the community college and we didn’t understand what was behind this.  Could it be that Laura was lazy? I would be in denial if I said that opinion never crossed my minds.  Nonetheless, every time class registration was open, Laura expressed a strong desire to do sign up.

Maybe this time would be different.  So after getting a commitment from her that “..if you drop this class you need to pay us back [the money]…” she signed up.  Within a couple weeks Laura said she wanted to drop the class.  Cost: $340.00.  Well, she wanted no part of that (remember: Money Speaks) so after Laura realized begging and pleading wouldn’t help, she reluctantly stayed in the class.

When confronted with challenges people typically chose one of three options: fight, flight, or freeze.  The basic premise is that when an individual (or for that matter any animal) is in the midst of a dangerous or unknown situation they will either choose to fight for survival, flee to [try to] avoid the danger, or freeze and hope the danger passes.  Even seemingly simple tasks of everyday life require one of these three choices be made. Take for instance driving on the beltway.  In order to get on the beltway, a driver needs to merge into cars traveling at 60 mph or faster.  We’ve all seen drivers that will come to an absolute stop and wait for a large gap to open before merging into traffic. This type of driver made the “freeze” choice.  The driver who continues to accelerate thru the merge lane until he finds an opening to move into would be considered the “fighter “.  And in this particular example,  you will never see the “flight” driver because they just avoid beltway driving  all together, instead using other roads.

I classify Laura as a fighter.  Her challenge: achieve a working knowledge in a specific field so she would have marketable skills and abilities that would help her live a productive and satisfying life.  Laura was and is not lazy at all. Completely the opposite, Laura kept fighting and fighting to succeed.  Even after missed semesters or dropped classes, she kept getting back in the game and fighting. Fighting for what she wanted.   

Spring semester 2011 is when personal challenges occurred seemingly every day.  Laura’s handwriting became almost illegible, she had a difficult time driving to and walking to class.  Assignments were difficult and attention to detail was declining. Darlene regularly helped Laura with all her assignments, I assisted Laura with Microsoft Word and Excel.  Halfway through the semester is when she went to the ER with a subsequent 3 day inpatient stay.  After discharge, and before we had a conclusive diagnosis, Laura continued to go to class.  No longer did Laura drive so Darlene rearranged her work schedule so she could drive her every Tuesday and Thursday.  Laura made huge strides by asking, and getting, the college to give her accommodations with class, a note-taker if so desired, extended time allowances to complete projects, and more.  This must have been very scary and awkward for Laura to request these services. I believe her persistence was a rare display of inner strength and deep belief in herself and her abilities.

Laura passed her class and thereby confirmed what we had hoped all along - her desire to succeed and do whatever it takes to accomplish the task.  Of course, the $340 penalty was a huge motivating factor. But she finished in the midst of significant obstacles that very few can ever say they’ve been through.

Laura’s class ended in the middle of June 2011. One week later we left for our vacation in Maine with a stop to visit a cousin in Newport Beach, R.I.  We spent 5 days in Bar Harbor and on the way home we spent one afternoon with Uncle Stephen and Aunt Guita (who live in California) who were in New Hampshire visiting friends.  It was a great vacation, provided  lifelong memories, and is a vacation we will always cherish for the rest of our lives.  

Upon our return, and since we now had a definitive diagnosis, Darlene and I began working multiple angles and rearranging our lives so we could assist Laura through this time of need. Darlene concentrated on scheduling and going to all the doctor appoints; I concentrated on resolving insurance issues and beginning the process of applying for social security/SSI and other social programs that this great nation has in place to assist those who truly need assistance. 

[Trying] always to be mindful of the encouragement, support, love, compassion, and dignity that our daughter deserves, Darlene and I consider ourselves to be truly blessed for the opportunity to share in Laura’s condition. I’ve heard it said that “… A burden shared is a burden halved; a joy shared is a joy doubled…”.  

Regardless of treatment (bone marrow transplant) this condition is progressive and will last a lifetime.

We are extremely grateful for the support and prayers we receive from family members, friends, neighbors, community, colleagues, and the church which we attend.  We appreciate the understanding and support by our employers.