Archive | December, 2011

The Cost of Going Ninja

19 Dec

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.)

How Can I Help?

17 Dec

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.

About Donating

14 Dec

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

14 Dec

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

7 Dec

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.