April 21, 2013


a few posts ago, i wrote about sparky's need to receive a treatment called IVIG. we have been fighting to get him this treatment for close to a year. he sits right on the threshold of meeting the criteria to receive this treatment in canada. if it was doctor prescribed in canada, it would be covered by insurance. it is an expensive treatment at a cost of approximately $10,000 per dose.

in canada, this treatment is generally reserved for those with certain autoimmune conditions or those patients with immunoglobulin deficiencies (primarily immunoglobulin G). sparky fits the criteria for immunodeficiency. lab tests revealed he is low in all three of the primary immunoglobulins that help make up the immune system. they are called IgM, IgA and IgG. the IVIG treatment replenishes the IgG levels. additionally, sparky has chronic low WBC, high lymphocyte count and high CD 19 B cell counts. these results show that his immune system is depleted and has gone into over-drive.

so, yes, his immune system is depleted AND hyper active! confusing right? the hope is that IVIG will treat both these issues that are seemingly at odds with each other. the aim of IVIG treatment is two-fold; the first is the infusions will "top up" the IgG levels of the immune system. by replenishing the IgG levels, his immune system will be better equipped to fight his infections. secondly, a better equipped immune system can respond to infection and work more efficiently - rather than hyper-reacting. 

to meet the canadian criteria for IVIG, a patient must exhibit deficiencies in these antibodies (primarily IgG) as well have a history of chronic infections. so he fits the bill...one would think, right? the problem is the immunologist he has been seeing doesn't see his history of chronic lyme as evidence of a prolonged and severe response to infection. duh. i know. bang head here.
we've tried to change this opinion for many months. but in the end, the door to medical treatment in canada was slammed shut with a resounding thud. 

this put us between a rock and hard place. a few months ago, we weren't even sure that it would be possible to access this treatment thru the USA. at our last appointment with DR H (end of Feb) all of this was discussed. he began to move forward with researching options. in the meantime, he prescribed the balls to wall treatment as a one last ditch effort. the hope was that this very aggressive course of treatment would be enough to miraculously turn things around enough that it would negate the need for IVIG. 

it has not. there has been little response - good or bad - to the balls to wall treatment.

i had a follow up phone appointment with DR H 2 weeks ago. we discussed the fact that there has been little change in sparky's condition. so, the time has come. he believes that sparky is in dire need of IVIG. while on the phone with me, he called a neurologist in connecticut to see if he could take sparky on as a patient and get the ball rolling on IVIG...the treatment cost alone would be $30,000 plus doctor's fees and travel costs to connecticut.

i got off the phone with DR H and prayed for a miracle. 

aside from the mind boggling cost, we had reservations about him undergoing this treatment so far from home in the USA. there is a slight risk of a serious allergic reaction or other complications occuring. as much as our faith in the canadian medical system is frayed, we'd really rather be in our own country for a medical emergency...even if there is only a small risk of an adverse reaction.

we just simply prayed
we asked you to pray.

pray for a miracle.

fast forward and i have great news to share. 

connecticut is out!

DR H called the beginning of last week to give us the good news that he would be able prescribe the IVIG and that he had been able to find a pharmacy that could provide the medication for a substantially lower cost.

this meant that we would not need to travel to connecticut. we would just need to travel to SF every month for the next 3 months in order to receive the treatments...or, DR H said, if we could find a canadian doctor to supervise the 6 hour long, twice per month infusions then we could have them done here.

again, we prayed for a miracle.

by last friday we had a canadian doctor lined up to supervise the infusions in a clinic.

accessing IVIG treatment has been near impossible for a year... and now in a matter of 2 weeks, it has become possibility. one thing this journey has taught me is to expect miracles. our God is the God of the impossible. how else have we made it this far? sure, it would be far simpler (and a whole lot cheaper) if God just reached down from heaven and supernaturally healed us. i know, right! yet, He has not. rather He has taught us to seek His direction, walk by faith and Trust Him with the directions and details. after all, He has the master plan.

when it comes to this next path set before us, i have a keen awareness that God's hand is over it. this treatment is a serious undertaking. there are risks involved and there is no guarantee that this will work or help. yet, over the course of the past 2 weeks, the concerns that we had, have slowly melted away. we have had 3 doctors that specialize in treating lyme all conclude that this treatment could be the game changer. that this could put sparky in remission. that this may finally bring relief to his suffering. sparky was seen by our seattle doc, DR D, this week. she has a different way of approaching things, so we were curious as to what her opinion would be. after examining and evaluating sparky, she concluded that IVIG could be "the big wow".

there are some minor details to figure out and still one major hurdle to leap but we feel we are standing on the precipice of an unfolding miracle. the biggest hurdle is financial. we have been able to reduce the cost of treatment substantially but it will still cost us roughly $10,000 out of pocket. we do not have $10,000...but we have been to the bottom of the barrel before and somehow, someway God has provided. often in miraculous and humbling of ways. why should we expect now to be any different? indeed, He has already began to meet our need - last week, a teacher (from sparky's former school) approached us and asked if he could help raise funds for IVIG. he hosts a charity golf tournament every summer. he, along with other organizers, will be designating half the proceeds from this year's tournament to sparky's treatment. we are blown away! while we are not sure of what the outcome will be, this has given us hope and will help to bring us one step closer to IVIG.  

above all else, we strongly believe that God knows what sparky and his battle weary body needs. He is the great physician. right now, IVIG seems to be the way to go.

we are praying and moving forward in faith, trusting for His miraculous provision.


Kristie de Jong said...

I am sitting her bawling my eyes. So happy we serve a God of miracles....

Anonymous said...

Hello. I am going through similar struggles with my health so my heart goes out to your son.

If your son has low immunoglobulin on tests, its baffling that the doctor wouldn't give him IVIG here in Canada. I don't know about this country sometimes...

anyway, if you ever need immunoglobulin again, a slightly cheaper way would be to do it subcutaneously. I am not sure if it would be just as good, but I think it might be.

best of luck!