God is in the Details

(Fair warning:  This blog post could easily be titled, “The One Where Amy Abuses Parentheses With Reckless Abandon.”)

I have a habit of always deciding how I am doing currently based on how I was doing when I first became ill.  A good many of you who are reading this were in my life 17 years ago when my health took a drastic turn and I became a walking quadriplegic in a span of two weeks.  I lost almost a full year of my life when I was 17, spending my time in both physical and occupational rehabilitation.  I had to learn how to walk again, how to hold a pencil, how to feed myself and just about anything else you could imagine along the way.

I remember hours spent one afternoon with a stack of fifty sheets of paper and a green marker held loosely between both hands.  My fingers dangled uselessly and kept getting tangled together, making me toss the marker often and have to buzz a nurse to retrieve it (I was a youngster in a rehab hospital full of senior citizens.  I was every other patient’s surrogate grandkid and the nurses’ pet.  If I had to be in rough shape, I was in the best place to get good treatment.)  I wanted so badly to will my hands to write my Dad a simple two word note, “Perk Up.”  It was an inside joke between us and I meant it to say, “I love you and I know you would fix this in a second if you could.”  I sat in my wheelchair in that hospital room and went through the entire stack of nurse procured printer paper before finally managing the words.   Pre-schoolers would tease me in the schoolyard if they saw those two short words, written horizontally and filling the page with two lines.  It was the neatest my handwriting had been in weeks.

While I worked on that note, the mailman came to my room to bring me my daily stack of 20 plus cards (you all have had my back from day one.)  He saw me sitting there with my hands covered in green marker ink and the floor littered with my failed attempts.  His kind smile made me think that he was likely some kid’s favorite Grandpa.  He invited himself to have a seat across from me. He commented that he had noticed I had a lot of daily mail and then he asked me about the project I was so feverishly working on.  Ever proud of a quality comedic, yet tender, jab, I told him all about the story behind, “Perk up.”  He laughed (I’d tell you too, but you had to be there) and then sat there and opened each one of those envelopes for me, pulling each card out slightly so I could manage to pull it out myself (which I did with my teeth.)  This became a daily visit for me while I was in-patient and he became another one of the countless, and often nameless, cheerleaders I would meet along the way.

Since then, I have felt ill to be sure, but I have never been as disabled as that.  How can I complain when I know how much worse it could be?   Even as my body has been on this slow seven year decline, I have reasoned that I am still walking (mostly) and at least I am not confined to a wheelchair for my day to day.

I think that, because I can walk generally unassisted (I sometimes use a cane when very fatigued and also use a scooter or wheelchair for most extended outings) and because I can reasonably use my hands (though, my hand sensitivity is much as though I were wearing leather work gloves), I would often rather think that my MS is a good deal better than it could be than to think that it is all that bad today.  If there is a flaw to this thinking, it is that I often don’t take the long term implications seriously and likely wouldn’t have if it wasn’t for the recent and persistent prodding I have felt from the Holy Spirit.

On this past Monday morning Eric and I went to the imaging center and I had a 2 hour MRI that looked at my brain and complete spinal cord.  My kind neurologist asked me to come to his office with the finished scans that very day and he let me sit with him while he gave it a quick going over.  He will spend further time looking at it in greater detail on his own and his final thoughts should be available in a few weeks.

Upon looking at the first few views of my brain, he marveled at how low my lesion load was.  Indeed, he initiated his perusal of my scans with such marvel at the “mild” lesion load that I have to admit my gut reaction was to worry that he would continue to say, “In fact, this brain is pristine and you have just been a big whiny baby all these years about a little bit of nothing.”

My fears were not realized and to my “relief” he found some evidence of disease.  (Am I the only ambulatory MS patient who suffers this regular episode of absurd panic?)  The center of my brain showed a moderate amount of Dawson’s fingers (a kind of MS lesion along the ventricle-based brain veins that is so typical of MS that it has a name.)   I have some degree of scarring on my brain, though not nearly as significant as I would have thought, or have seen on other patients similarly disabled as I am.  He continued to scroll around and he spent a few minutes examining my right side parietal lobe.  I have a nickel sized lesion worth being concerned about there, he tells me.  (A lesion differs from a scar in that a lesion is nerves that are actively being damaged, while a scar is the aftermath.)  He said that we needed to keep a close watch on it and then said to me, “You are in a good place to intervene and prevent further disability.”

He continued to my spine where he commented, “Here’s where we see more activity.”  My spine had 3-4 lesions on it during his cursory look, as well as measurable scarring.  This explains why a number of my symptoms are in the family of spinal cord injury – my spinal cord is injured and it happened all by its own self.   It was at this point that he stressed two more times that I needed to intervene to prevent further disability.

I have to leave this doctor’s office scene for a moment to tell you why my brain’s appearance was so very incredible…

When I was first diagnosed with MS, I had a much larger lesion load on my brain than I do now.  On MRI, lesions look like cotton balls and my scan in Feb. 1995 was dotted like the cotton fields in Lubbock, TX.  It was, in fact, very easy for the doctor to determine a diagnosis at that time because it was just that clear.   A lesion load that large would indicate that the scar load today would likely be significant, and yet my brain was incredibly low on scars.

Two years ago a dear sister in Christ prayed over me that I would be healed.  Not even knowing that MS is a disease of the brain, she said while she prayed, “I am seeing a brain with wounds all over it and I see a skillful Artist’s hand with an eraser and He is erasing the wounds.”

Shortly after that prayer time with her and others, I began to feel a good deal better than I had since my initial recovery.  I started to go on long walks, going up to three whole miles in one go at it.  While I still was very aware that I had MS, I felt better than I ever had with it.  This lasted for about three months and then seemed to stop suddenly.  Almost over night I was again unable to walk long distances, my hands fumbled, and my pain level, which had gone from a 6 to a 3 on a scale of 1-10, was ramped up to a 7-8.

I believed that God intends to heal me of MS from the very day that I first heard the word mentioned in connection to me and I have not shied away from telling people that over the years.   I do not say this because I believe that God intends to heal everyone on this side of eternity, or because I think I am extra special and deserving of something that not everyone gets.  I simply feel it and believe just as certainly as you believe that Tuesday comes after Monday.  This level of faith is one of many comforts given to me by the Holy Spirit though this journey.  Having my body return to its former state of “works okay, but could be substantially better” did not change that understanding in my mind.  It simply confirmed to me that He is the Author of my healing and the Permiter of my sickness and that healing is going to come along at His decided upon time and manner.  Those three months were tucked away in my heart and felt like a heralding of things to come.

Now, let’s go back to the doctor’s office so we can wrap this up…

My neurologist is aware of my desire to go to Israel to receive chemotherapy and he only seemed concerned with whether I would be able to gather the funds.  He finished up our visit with one last admonition that I needed to intervene immediately with “the therapy of my choice.”  Based on tone and response, I can only speculate that he understands this to be a viable option, though I would not presume to speak for a man in his position on this public forum.  He is a well regarded MS specialist and it is no secret to any of his patients what his thoughts are about what course they should take.  If he didn’t think this was viable, I am convinced he would have not only said so, but he would have thrown in a jab at the “quacks who come up with this stuff.”  (Important side note:  It is extremely rare to find a neurologist willing to be vocally supportive of HSCT for auto-immune dysfunction.   Few will argue with the results of FDA approved research into this – all the same, they remain mostly silent.)

So, I left his office with a mixed bag of news.  It would appear that the disease is modestly active in my brain with only one active spot that immediately stood out.  This is not great news, but it could be drastically worse.  It also seems that God has protected my brain from the volume of damaging scars that so many experience.  This is gloriously great news.  My spinal cord is scarred and experiences the disease more actively than my brain.  I don’t suppose I have to tell you what kind of news that is.

Here is how I understood that visit: I am at a fork in the road with MS and I am lined up to either continue on with further disability or go the other way and show MS the door once and for all.

The hospital in Israel has accepted me for treatment.  In fact, they said I could come as early as January 16.  That is nowhere near my timeline, and I told them as much.  Though I don’t intend to leave next week, I am in a hurry to stop this disease while I am at this level.  Before I saw my MRI results, I believed that God was lining me up for a whole new season of renewed health.  The results are not a determiner of that outcome, but I feel they give evidence to His intervention.

I understand that man makes his plans while God makes His.  With that in mind, here is my personal timeline:

• The hospital total cost is $94,000.  We have to wire this to them before they will schedule my six week session.  We would like to be able to send this to them by May 31.
• Beyond paying for the hospital, we will need to raise funds for travel and accommodations.  We would like to plan to arrive in Tel Aviv on July 15 with intentions to begin the process on July 17.  Our estimated total cost for that is $25,000.  (Some have suggested that people can donate frequent flyer miles towards this goal.  We would be happy to accept such a donation.)
• When we return from Israel, I will need to be closely monitored by a chemotherapy trained physician to see how my immune system heals.  I will also need intense physical therapy and further MRIs/neuro check-ups to determine my results.  We estimate this to cost $8,500-$12,000.

You will notice that this leaves some flex in our fundraising goal of $140,000.  This is to cover all the unknowns that will without question come into play along the way.  Any funds remaining will be donated directly to Northwestern University to further the stateside research into HSCT for the treatment of auto-immune dysfunction.

Because of your very generous donations up to now, I have been able to fund my baseline MRI and my visits with the neurologist.  Because of God’s great kindness, I was able to see a neurologist who paid immediate and thourough attention to my case.

Information on how to donate is in the upper right hand corner of this blog.  I know that there are a few groups of people working on fundraising events.  If you have an interest in such a thing, contact me or any member of my family.

Thank you for following along, for your prayers, and for your genuine enthusiasm for this endeavor.  I said from the beginning that this is going to be fun to watch and I believe that just as much today as I did then.  The task before me is no small thing and I don’t want to appear glib about the intense seriousness of the medical intervention I have chosen.  At the same time, I do not want to discredit God’s sovereign movement in all of this.  It has been a wonder to behold.

Tags: adult stem cell, bone marrow transplant, chemo, chemotherapy, disability, donate, friends, God, healing, hematopoietic stem cell transplantation, ms patients, multiple sclerosis, prayer, steroids

Why Chemotherapy?

Let’s talk about stem cells and chemotherapy a bit, shall we?

There are two basic categories of stem cells:  adult stem cells and embryonic stem cells.  Adult stem cells have been used for decades in the treatment of blood disorders, certain cancers, and for auto-immune dysfunction.  Embryonic stem cells remain highly controversial for a number of reasons.  Aside from the obvious, embryonic stem cells have proven unstable and not useful using current medical standards.  As a former embryo myself, I can’t get past the “Soylent Green” aftertaste of embryonic stem cell use.

Among adult stem cells, there are three sources for autologous transplant (this is a donation that comes from the patient’s own body):  Bone marrow can be extracted by means of drilling into bone (usually the hip).  Adipose tissue is stored in fat and is extracted through liposuction.  Stem cells can also be drawn from the blood using a process called pheresis.  Much like a blood donation, the blood is drawn out of the patient and run through a machine that removes the stem cells from the blood and returns the blood back to the patient, minus the stem cells.

When I first began my search into what was clinically available for MS patients, I looked very closely at autologous adipose stem cell transplant with no chemotherapy.  My own understanding (seriously,  fact check me because everything I say is based on my own understanding), is that such a transplant offers MS patients a certain degree of relief from a current exacerbation and some amount of short term damage prevention.  The main reason this method did not appeal to me the more I looked into it was because the benefits are not very long term – patients return multiple times for treatment and must remain on MS maintenance medication.  If you are interested in this method, be very careful about the clinic you choose.  The only one I researched at any length was Dr. Paz in Panama.  It looks like a good clinic, though I have no personal experience with them.

It was not very far into my research that I learned about the ongoing trials in Chicago utilizing hematopoietic stem cell transplantation (HSCT), also commonly known (and easier to spell) as a bone marrow transplant.  What struck me as incredible about this method is that stem cells are not the hero of the story – the chemotherapy is.   The chemotherapy destroys the immune system and, in a way, shocks it into rebooting with fresh stem cells.  The human body is constantly in the process of creating stem cells, though not fast enough, so the bone marrow transplant is done to speed up that process.

There are two kinds of chemotherapy with HSCT that I could choose from: myeloablative and non-myeloablative.  Non-myeloablative is also called a “mini transplant” or “reduced intensity transplant.”  It is, essentially, half the chemo and half the recovery time of myeloablative chemotherapy with HSCT.  In myeloablative chemotherapy, the stem cells are given to the patient after strong chemotherapy because without the stem cells the patient will die – whereas with non-myeloablative chemotherapy with HSCT, the stem cells are given to speed up the healing process and shorten recovery time, even as researchers suppose that a patient could theoretically survive without it.

Following HSCT, regardless of the method of chemotherapy chosen, studies have shown patients to experience a 74% to 86% chance of stopping the progression of MS for ten years or more (there is good reason to believe that  it will last longer than that – even for a lifetime.  I am being conservative in my reporting.)  Patients no longer need maintenance therapies and carry on essentially disease free, with the exception of any damage that is not repaired and is deemed permanent.

I do not believe that chemotherapy alone will be the only tool in my bag of ninja tricks.  Diet plays a role, as does physical therapy and exercise.  I believe that, following chemotherapy, I will get a greater return for my efforts in diet and exercise.  Currently I am two steps forward and three steps back because the disease is not stopping.

My next post will contain information about my anticipated timeline and details of my recent MRI and doctor’s visit.  Thank you for reading and encouraging me in this journey.

Tags: adult stem cell, bone marrow transplant, chemotherapy, embryonic stem cells, hematopoietic stem cell transplantation, multiple sclerosis, panama

The Big Picture

My grandmother died with one of the most severe forms of rheumatoid arthritis imaginable.  RA is an autoimmune dysfunction.  My Mother has lupus, also an autoimmune dysfunction.  You are here because you know that I have multiple sclerosis, an autoimmune dysfunction.  There is no question that genetics plays a key role here and that the women in particular in my family seem to be plagued by varying degrees of autoimmune dysfunction.  Worry is a waste of precious energy, but I must confess to giving every minor hiccup my daughter experiences more than a moment’s pause to wonder, “Is this it?”

Hematopoietic Stem Cell Transplant with chemotherapy offers the opportunity to shut down a broken immune system and reboot it with no memory of dysfunction.  This is not just good news for people with Multiple Sclerosis, as it is a therapy that has proven effective for a number of autoimmune dysfunctions.

There is some debate as to whether this effectively “cures” immune dysfunction, or if it puts into effect a strong remission.  My personal understanding is that the genetic floor that caused the disease in the first place is not removed by chemotherapy, therefore the DNA components still exist.  I understand this to mean that the disease is shut down, packed up, wrapped in miles of packing tape, and stored neatly in a dark corner of my body’s attic.  Just like in a horror movie, some unsuspecting environmental youngster might stumble on this box many years down the road and open it up, ending my remission.  While I understand this is a possibility, the results of research thus far have proven to allow two years of recovery followed by ten+ years of being disease free.  As far as I am concerned, this gets me all the way through my kids’ time at home with us.

Many have asked me why this therapy is not available in the United States, if it is so effective.  Currently, HSCT with chemotherapy is being offered under the direction of Dr. Richard Burt in Chicago.  It is very expensive and the standards to get accepted are strict.  (Again, for MSers following along: I’d look here first.)  He is in Phase III trials, the final step to making it available across the country.  The process is very slow because funding is difficult to come by. Adult stem cells are boring old news and embryonic stem cell research is where all the buzz is.  It is difficult to get money from investors when there is no money to be made and there is no money to be made in curing MS.

This research is patient driven. The kind of people who push for and invest in HSCT research are not people looking to make a dollar, they are people like me.   The only way to mainstream HSCT as a protocol for the relief of autoimmune dysfunction is if people like me keep demanding it, chasing it, and proving it.   I have limited funds that I can invest, but I am happy to invest my own body into the research that I believe will one day revolutionize treatment for the very condition which has robbed me, my grandmother, my mother, my cousins, and so many countless others.

I know that for many, I am the scrawny kid at the top of the very high dive, knocked kneed and daring myself to jump.   There are many who are watching me very closely, because as soon as I bob up to the top of the water and give the thumbs up, they are going to scramble for that ladder.  When you invest in my jump, you invest in their hope.

Timeline Goals

I understand that man makes his plans while God makes His.  With that in mind, here is my personal timeline:

• The hospital total cost is $94,000.  We have to wire this to them before they will schedule my six week session.  We would like to be able to send this to them by May 31.
• Beyond paying for the hospital, we will need to raise funds for travel and accommodations.  We would like to plan to arrive in Tel Aviv on July 15 with intentions to begin the process on July 17.  Our estimated total cost for that is $25,000.  (Some have suggested that people can donate frequent flyer miles towards this goal.  We would be happy to accept such a donation.)
• When we return from Israel, I will need to be closely monitored by a chemotherapy trained physician to see how my immune system heals.  I will also need intense physical therapy and further MRIs/neuro check-ups to determine my results.  We estimate this to cost $8,500-$12,000.

You will notice that this leaves some flex in our fundraising goal of $140,000.  This is to cover all the unknowns that will without question come into play along the way.  Any funds remaining will be donated directly to Northwestern University to further the stateside research into HSCT for the treatment of auto-immune dysfunction.

Because of your very generous donations up to now, I have been able to fund my baseline MRI and my visits with the neurologist.  Because of God’s great kindness, I was able to see a neurologist who paid immediate and thourough attention to my case.

Information on how to donate is in the upper right hand corner of this blog.  I know that there are a few groups of people working on fundraising events.  If you have an interest in such a thing, contact me or any member of my family.

Thank you for following along, for your prayers, and for your genuine enthusiasm for this endeavor.  I said from the beginning that this is going to be fun to watch and I believe that just as much today as I did then.  The task before me is no small thing and I don’t want to appear glib about the intense seriousness of the medical intervention I have chosen.  At the same time, I do not want to discredit God’s sovereign movement in all of this.  It has been a wonder to behold.

The Cost of Going Ninja

The total sum that I am hoping to raise is $140,000.  The total hospital cost for chemo and bone marrow transplant is $94,000.  Airfare for Eric and I would cost an estimated $5,000, and hotel costs for a six week stay would cost an estimated $10,000-12,000.  When I return from Israel, I hope to be able to obtain intensive physical therapy costing an estimated $5,000.  I will also need to be able to maintain my blood tests and chemotherapy recovery follow up when I return, costing an unknown, but less than $3,000, amount.  There will be a minimum of two MRIs involved and the total on these is likely close to $7,000.

The total at this point is in the neighborhood of $125,000.  I am hoping to raise a total of $140,000 because all of my estimates are based on current rates and all things going exactly as planned.  While the odds are in my favor, there is the possibility of my acquiring an infection while my immune system is depleted and needing additional care while in Israel.  I would like to get there prepared for any event.

I have been approached by many who want to help, but don’t know how.  I am glad to hear that because the truth is that I have no clue what I am doing on the fund raising end and I could use all the help I can get.   I have spent so much time and energy researching the procedure, the hospitals, and the doctors that fundraising is the farthest thing from my mind, yet it is the most crucial at this point.

I am going to have to lean very heavily on my community to help me from this point on.  If you have any thoughts on how to raise money, or skills that may help, please let me know.  I honestly am flying blind from here on out.  This ought to be real fun to watch.

(For the MS patients following along:  You can receive the protocol I am seeking at Northwestern University in Chicago.  If you can get in to this program, I hear that the cost totals range from $250,000-$350,000.  Some insurance companies will cover half of the cost.  I would say that it is worth looking into for a step one, if the price tag doesn’t make you flinch.)

Tags: bone marrow transplant, chemo, ms patients

How Can I Help?

I got a phone call a few nights ago from Karl Johns.  You may not have yet had the privilege of having met Karl Johns, but if you went to high school with us, you know that Karl is a man among men.  In high school he was a football playing wrestler and was shaped like a triangle.  He also blushed and giggled if you dared tell him that you thought he was good at any of it.  Karl stood out as a fine example of Godly youth and I always admired him for it.  I had not spoken with Karl, I believe, since we graduated high school (mumble-teen years ago), until he called me out of the clear blue sky.

There were a few things which I did not take into account when I began this last, and most daunting, leg of this journey.  This endeavor of mine is such that I feel humbled and exposed.  Frankly, that is a scary place to be, and I did not consider just how scary full exposure could be.   I did not consider, also, the enormity of support that would step up from every page of my life’s story.   I have been sent daily reminders that every corner of my life is rooting for me and this keeps the scary at bay.

So, there I was, talking to Karl just like we are old buddies who always talk on the phone.  It was odd and really cool all at once. Karl tells me that he lost his job this summer (12 years solid security and law enforcement experience, fyi) and that he wanted to brainstorm some ideas for getting me to Israel and getting this MS done with already Karl’s enthusiasm was just what I needed right at that moment.  I got off the phone feeling ten feet tall and bullet proof.

So, how can you help?  You have come out of the woodwork to high five me and offer your prayers.  That is more help than I can express.  This is going to be difficult on a lot of levels, but I know that I will never be without support.

On Monday, I will post a list that breaks down the $140,000 that I hope to raise to fund this recovery mission and ways that you can help.  On Tuesday I will see my neurologist, go over my plans in detail, and get the MRIs ordered so that the doctors in Israel can be on the same page as my doctor here.   (For the MS patients following along: It gives me a degree of comfort that the doctors in Israel require documentation of my current status with MS.  I’ve had a (no chemo) adult stem cell clinic in Mexico accept me based on my word alone and that gave me immediate reason to pause.)

For right now, though, I just wanted to take a minute on this chilly Saturday morning to thank you for the donations, for the e-mails, for the comments on this blog, for the Facebook chatter, and more than anything, for your prayers.  I am bolstered by an incredible team because of a merciful God.

Tags: donate, friends, God, multiple sclerosis, prayer

About Donating

This will not happen without the financial support of all my friends and family and all of their friends and family and all of their friends and family.  To help, please help me get the word out with Facebook posts and e-mails.

Donations can be made at this website to a Pay Pal account using a credit or debit card, or donations can be mailed in to Westover Hills Church of Christ.  Make checks or money order out to “Westover Hills” and mail it to: Westover Hills Church of Christ | 8332 Mesa Drive | Austin, TX 78759.  It is easier for them if you do not put my name in the memo, but rather on a sticky note attached to the check or money order.  Please let me know when you send a donation to Westover, and the amount, so we can make sure it gets where you intended it to go.

In case you haven’t noticed my fancy new thermometer on the side bar, check it out!  We are already at $6,450 and we haven’t even started fundraising for real yet!  Thank you, thank you, thank you!!!

Head, Shoulders, Knees, and Toes

This post will serve as a baseline for what I am hoping will be a health graph that only goes up from here.  No more losses this year, team!

This will help in the months after the transplant to determine how much I have regained, and to determine any new losses.  Statistically, I should recover about forty percent of what I have lost already, while stopping any further disease progression.  However, you and I both know that statistics are not the determiner of outcomes.  God is.  Let’s shoot for 100 percent recovery, shall we?

I’ll start at the top and work my way down.

• Mind: I suffer from moderate cognitive thinking fatigue.  A healthy brain can start a repetitive task and be doing it on auto pilot by round three.  My brain fatigues of thinking after round two and by round six I am a high strung, anxious, panicky mess.  In other words, if I was asked to make ten pies, you would not want to eat pies 6-10.   I cannot handle more than one task at a time.  It has been a very long road for me to really see how limited I am in that regard.
• Eyes:  I have limited peripheral vision and experience a small degree of pain when moving my eyes from side to side due to damage on my optic nerves.  I often get migraines that start right behind my left eye.
• Face:  Between 3-7 times a day, I experience trigeminal neuralgia.  This is a very painful spasm that comes suddenly and lasts for up to one minute.  It is brought on by touching my face, brushing my teeth, smiling, eating, drinking, wind on my face and, oddly enough, sudden loud noises.
• Throat:  After about five minutes of using my voice (reading out loud, for example), I experience a sensation in my throat much like a large lump when one is about to cry.  It is very painful and I find that I must work to “talk around it” if I hope to continue speaking.
• Neck:  If I decide I would like to put my chin near my chest for any reason, I can guarantee that I will get an electric shock sensation down my spine.  This is called L’Hermittes sign.  It is annoying most days, but down right adding insult to injury when I am trying to stretch my way out of some other ms induced pain.
• Rib Cage:  The tiny muscles that rest between each of my ribs are in near constant spasm.  This creates a sensation some call “The MS Hug”.  Some experience it so badly that they have a difficult time breathing.  Mine has caused me to hunch over in a position that has caused other spasms in my lower back.  As far as my regular MS pain goes, this symptom is near the top of my list.  Most days, I feel as though my ribs were being crushed to fine powder.  Sometimes my breathing becomes tight and I have to talk myself down from a near panic attack.
• Arms and Hands:  My eye – hand coordination is surprisingly good for a kid who used to be a quadriplegic.  I have significant muscle weakness in my hands that can be mistaken for a lack of coordination because I often drop things.  If I cannot see my fingers, I do not know what they are doing.  Do not ask me to blindly dig at the bottom of my purse.  It never works out well.  My arms tire very easily and I have to be careful to parcel that energy out, because when it is gone, it is gone until the next day or two.
• Bladder:  I have a classic “MS Bladder.”  I put a link there so that I wouldn’t have to paint a picture.  Some patients have severe problems in this area.  My issues are minor annoyances.
• Hips:  I have spasms in my lower back that radiate through my hips and down my legs.
• Legs:  My balance is pretty good, considering, but it takes a whole lot of energy to stay upright, so I would say that my legs have maybe one hour total of daily walking around energy on an average day.  This includes time spent standing to wash dishes, fix dinner, walk from laundry room to kitchen to bathroom, etc.  Any more time standing or walking puts me in a deficit for energy.
• Feet:  I experience drop foot to some degree in my left foot.  This leads me often to put into practice the “tuck and roll” technique that a very wise occupational therapist taught me at the very beginning of my ms ride.
• Toes:  My big toe on my right foot is numb.  This is not a big problem for me, but, seriously.  I’d like to have my big toe back too.

In addition to these symptoms, I have insomnia and overall fatigue.  There are other things that come and go as I get more tired, but I figured this list of standard symptoms would be a great baseline for comparison.

I find that dealing with all of these symptoms through the day makes it difficult for me to reign in my emotions and present a good attitude.  It is no small thing the way God has bolstered me up for this challenge.

Latest News

There are two approaches to Hematopoietic Stem Cell Transplantation (HSCT). One method is called “myeloablation with autologous HSCT transplantation” and the other is called “lymphoablation with autologous HSCT transplantation”.

The first version is full chemo with bone marrow transplant, while the second version is a somewhat less intensive round of chemo with bone barrow transplant. The data only goes as far back as 9 years, but so far the results of both as applied to MS is identical. The less intensive chemo was developed, in part, by doctors with International Center for Cell Therapy & Cancer Immunotherapy (CTCI) in Tel Aviv, Israel (along with Dr. Richard Burt, the neurologist at Northwestern University who is currently in phase III trials of this approach.)

Lymphoablation with autologous HSCT as a protocol for MS is so far available only in the United States and in Tel Aviv (to the best of my, and others, research.)  I do not meet the protocol for the phase III trials in the United States, so I applied for admission to the hospital in Tel Aviv.

On this past Sunday morning, after two weeks of waiting by the phone, I received word that the doctors at CTCI would accept me as a patient.

This is not something that insurance will cover and I will be enlisting the assistance of friends and family to raise funds to make this happen.  I have a confidence that this will not be a long process.  My family and I are currently speaking with the proper folks to get the ball rolling and I will update as I know more.

For now, I will be starting the needed steps to prepare my body for the gauntlet and my family for the journey.  Please join me in worshiping a God who does not leave us abandoned to our misery.

Tags: God, hematopoietic stem cell transplantation, multiple sclerosis

What’s the Plan?

I was going to try and use my own words to tell you what I am planning, but then I remembered that I took freshman Biology twice to get a solid B-.  What follows is an excerpt from Neurology Reviews, vol 14, No 8, August, 2006:

Immunomodulating treatments are currently the only established forms of therapy for multiple sclerosis (MS), but by and large these treatments have been only partly effective for most patients. Based on the results of experimental models and on clinical observations in patients with malignancy and patients with MS, hematopoietic stem cell transplantation was proposed for the treatment of autoimmune diseases and has been shown in several clinical trials to be at least moderately effective in patients with MS. A newer strategy—high-doseimmunosuppression (also known as immunoablation) plus autologoustransplantation, which involves the complete eradication and reconstitution of the patient’s bone marrow—has shown promise in early studies and is now being investigated in ongoing phase II trials.  

Autologous hematopoietic stem cell transplantation was first studied [in the US] as a treatment for MS in the late 1990s [and in the early 1990's in Europe]. Results have been analyzed in both single-center andmulticenter trials and collectively in a retrospective study by the European Group for Blood and Marrow Transplantation (EBMT) retrospective study. Of the 85 patients with MS in the EBMT database, 74% were found to be progression-free at three years from transplantation, a percentage that is fairly consistent with all transplant studies in MS reported to date.

(note that the date on this is 2006.  The numbers continue to remain at about 80 percent of patients seeing a complete stop to the progression of their disease.)

Here’s how my friend the scientist, George Goss explains it:

“As a curative treatment HSCT works by changing the body’s overall T- and B-lymphocyte epitope (antigen binding) repertoire, inactivating autoimmunity (making the body’s immune cells “antigen naive”) which results in restoration of immune self tolerance. This is often referred to as “resetting” the immune system which stops the underlying MS disease activity & progression. Once achieved, the body then has a chance to repair (or compensate for) existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.”

Let me explain this to you the way I explained it to my ten year old daughter:

“Multiple Sclerosis is simply a bad immune system.  HSCT is a procedure that takes the bad immune system and shuts it down before booting it back up to be a disease free immune system.  While the procedure itself is grueling and not to be taken lightly, it is the only medically offered hope for MS patients who wish to stop the progression of their disease.”

I understand that chemo is a radical choice to be making when death is not on the line for me as it is for a cancer patient who faces the same choice.  The possibility of this not working is there.  The possibility of this being fatal is there.  But, when I hear “possibility”, I hear “maybe”.  My reality right now is that my body is declining.  It cannot be measured day to day, as I have good days and bad days, but the reality is that my ability to live comfortably is slipping away at a steady rate year to year.  I will not die with MS, but I will live a long and brutal life.  That is my reality.  When I hear “reality, I hear “absolutely.”

The science of what I want to do is not new (commonly referred to as “bone marrow transplant”).  The application of this procedure to MS is only as new as 20 years ago.  I feel confident that this will be standard protocol in the USA for the treatment of MS, as well as a host of other immune dysfunctions, by 2020-2025.

This is huge, I know.  I heard about these studies when I was about three years into this disease and it all seemed kind of drastic and unnecessary back then.  I am so very happy to know that God continued to prick the minds of science detectives for all these years.  A jerk doctor told me when he diagnosed me that, “This is an exciting time for MS!”  Maybe he was a jerk, but he may have also been right.

Edited to add: If you are an MS patient looking for more information, George Goss’ blog is a fantastic clearing house of info and is a great place to start.  Good google phrases to get you started are:  ”Autologous hematopoietic stem cell transplantation, autoimmune dysfunction”, “HSCT, multiple sclerosis”, and, “nonmyeloablative transplant, multiple sclerosis”.  Just copy and paste any one of those combos into your search engine and you will get a whole lot of great information.

Tags: chemo, hematopoietic stem cell transplantation, medicine, multiple sclerosis, progressive., rrms