Saturday, April 11, 2015

Hello.  As Kristie is still very much under the weather, I (her husband) will be filling in (assuming I don’t spontaneously combust).  I think this is just my second Facebook post in the past three years.  We managed to go by a doc-in-the-box today, and they up’d Kristie’s meds.  When we last checked this evening, she had a 101F degree fever, so she is obviously still contagious.  We are hoping a good night sleep will help get things turned around.  So far it appears Eli has been spared from whatever (bronchitis?) has stricken Kristie.

Kristie asked that I post about Eli’s trip to MDA on Friday (4/10).  Our first appointment was at 8am with Dr. Dean Lee.  It was a screening to check Eli for any infectious (blood related) diseases.  Dr Lee was very personable; he was quick to smile and interact with us.  It was a great way to start our day.  However, before he got started with the examination, he made the mistake of asking me if I had any questions.  I didn’t realize at the time how involved Dr Lee was with the NOAH protocol, but if somebody is going to open the door, I figure its only my duty to step through :). I thought I’d share my questions and his answers in case anyone finds it interesting.

One of my first questions was whether NK cells exist inside the blood/brain barrier naturally.  He said historically the answer has always been a firm no; however, recently that theory has not been considered so solid.  He said that in general, there just aren’t strong enough signals from inside the brain/blood barrier to coax those cells to come through.

I also asked him about the role NK cells normally play in our body.  Specifically, I mentioned I was talking to a friend recently, and he told me that people that have autoimmune disorders will frequently take medicine to slow down their immune system.  While this apparently relieves the individual of their symptoms, a terrible side effect is an increased risk of cancer.  It was fascinating to me to realize that we all have misbehaving cells that can be pre-cancerous or even cancerous.  It is just that normally, a person’s immune system can isolate and destroy these cells before they can do much damage.  Dr Lee responded that NK cells are one type of lymphocyte or white blood cell in our body.  The other two (T-cells and B-cells) he equated to being like the CIA.  They are trained to attack a very narrow range of misbehaving cells.  T-cells can last up to 40+ years (think chicken pox immunity) while B-cells don’t last quite that long.  NK cells he equated to being more like the border patrol.  They are very broad in their identification of misbehaving cells, and basically interrogate every cell they run across.  I believe that is why NK cells are the target of the NOAH protocol; they should be much better at identifying the various warning signals produced by cancer cells.

As a follow on question, I asked Dr Lee how long NK cells live inside the blood/brain barrier (since presumably white blood cells are produced in our bone marrow and hence won’t naturally replenish themselves if found inside the blood/brain barrier).  In short, I think Dr Lee said that is basically one of the questions researchers hope to answer as part of the NOAH trial.  They expect that they may only last around 24 hours.  In my mind, that is why the patients will be receiving injections every other day (MWF).  However, he said there is research where NK cells were found to still exist after 3 months.  What will happen to them and at what concentration levels they will exist is some of the answers researchers are hoping to answer with this phase I trial.

At this point, it was obvious I had exhausted question and answer time with Dr. Lee, and the examination of Eli was started.  But I so appreciate the time Dr Lee took with me.  It is one of the highlights of our MDA journey so far.

I will try to be much briefer with the rest of our day.  Eli’s subcutaneous port was already accessed, so Eli next gave the blood from which all his future NK cells will be grown.  This was an obvious major milestone for us.  One of the researchers told us that Eli gave the equivalent, for him, of about half of what an adult will give when they donate blood.  This resulted in about 10 full vials being sent off.

Next, Eli got pentamidine (antimicrobial prophylactic) up in the pediatric inpatient unit.  This was one of the first times I had been to this floor and from our brief visit, it was very nice.  Our room was quite large and Eli enjoyed choosing from a large of selection of free movies.  However, the combination of giving blood and the pentamidine took its toll on Eli.  But he nibbled away at some crackers and after an hour or so he was on his way to being his old self.

We ended the day with a MRI that they had hoped to do the previous day (but Kristie was just too sick to come).  Apparently, they needed to scan his lower spine in an area that was missed in the earlier CINE scans.  Thankfully it did not require sedation, or more importantly, the all day NPO (i.e. no food/drink) it would have required.  But it worries me that this MRI is part of the CINE test, as theoretically, if they find a problem, Eli could still be found ineligible for the trial.  The MRI took much longer than expected because Eli’s fingers were just too small for the adult sized pulse sensor used with the MRI machine.  Apparently it is critical that a CINE MRI scan be synchronized to a person’s heart beat.  I tried to ask some questions on why that is, but was unable to find an exact answer.  I can only guess it is because it helps eliminate the motion induced by a heart beat.  Ultimately, they moved Eli to another MRI machine that supported a cardiac sensor.  The MRI was then completed in short order.

If you made it this far, please pray for Eli’s surgery on Monday.  They will be performing brain surgery to insert an Ommaya reservoir.  We are suppose to check-in at 5:30am.  The surgery will take 4 hours and he will have to remain hospitalized for at least 4 days.  I was not there when Kristie talked to the neurosurgeon, but there are a number of risks (debilitating conditions) that can occur.  But we were told this neurosurgeon has done about 7 of these specialized surgeries with very little adverse effects.  Hopefully towards the end of next week, we can say this surgeon has done 8 of these surgeries with little or no adverse effects.

Sorry for the length and dryness of this post.  I’m more of a “just the facts ma’am” person.  Hopefully Kristie will return soon with pictures and actual writing talent :).

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