your prayers and kind words have meant much to us this past week. our faith is strengthened and our minds put at ease when we learn we’re being prayed for by so many. and the comfort food delivered to our door has not only kept us fed, but has served as a daily reminder of the community of which we’re apart. we feel less alone as we sit down to a meal that has been prepared by the hands of others. so thank you. your kindness contributes to any peace we might have through this time.
difficult days. hard news…and then again.
i feel that jen and i and our boys have grieved well the loss of grandpa bruce. we are sad, but at peace. for we deeply believe he’s alive and well in a dimension unseen by us, but no less real than the flesh and blood reality that we know so well.
and of this flesh and blood reality…
it seems that my bone marrow has stopped working. my body is no longer capable of producing the blood i need. a chromosome has gone rogue and changed my marrow from what would be compared to life-giving water to something more like paint-thinner, or saltwater at best; it’s wet, but you can’t drink it.
by necessity my care has been transferred from the health partners network at regions hospital to the transplant department at the university of minnesota. they called yesterday to schedule my initial consultation, which is next thursday at noon.
because i have not yet had that consultation, there’s only so much i can say with certainty. but i will nonetheless share what i’ve come to understand so far.
i have what is called treatment-induced myelodysplastic syndrome, or MDS. it was once known simply as preleukemia, which it is, but that tells only half the story, thus the name-change. it literally means funny-looking bone marrow, which sounds fairly benign. it is not.
it would seem that i am in the highest risk category for this turning into an aggressive leukemia. however, even on this side of that, my bone marrow is no longer capable of producing the blood my body needs – white blood cells, red blood cells, and platelets – the whole package. it is barely doing so now, but even that diminished ability is vanishing quickly.
it is called treatment-induced because it is most likely a consequence of the aggressive chemotherapy that saved my life six years ago. i received massive amounts – and a broad spectrum – of chemotherapies over the course of a two year time span, and as mentioned, it saved my life.
but we were also informed upon finishing nearly five years ago that the longterm consequences of that treatment could be severe. this is that.
(this is not to discourage anyone from necessary and curative chemotherapy, as most treatments do not do this…)
when i was hospitalized last week, we were hoping for a cancer or something of the sort that would require less of us than what was required years ago.
this is not that.
what will most likely be required, and what my doctor has already spoken of with us, is a stem-cell (bone-marrow) transplant, preceded by an induction round of chemotherapy very similar to the first month of my cancer treatment years ago.
this is hard news.
i meet the cut-off age-requirement for such a procedure by 4 and 1/2 years. according to some i am “young and healthy,” but those of you who know me well know how fuzzy that statement is.
i will require another’s bone-marrow, as mine is so broken. the closer kin come first, so my brother patrick and my sister mia are receiving DNA testing kits from the U in the mail; for the closer the DNA is to matching mine, the better the odds for a transplant free of complications, the main being graft-verses-host disease, in which my body rejects the incoming marrow and all hell breaks loose in my body.
but we don’t want hell. we want heaven. we want it here and now – in this world, in this life – touching my broken body and making me whole. and so we pray.
this is all very hard news. our hearts are heavy. it is hard not to be morbid. there is no pre-crisis naivete, as is so common and so divine, as we’ve done half this before, and it was very hard. in fact, when i finished last time, i had decided i would not do it again, if it came to it.
but it has come to it, and God help me, i’m going to fight like hell. for there is much life to live.
(…and if i’ve offended you, i am sorry. there are very deep emotions in play, and i pray you will understand and give me grace appropriate to the circumstances…i speak this way so rarely…but words can do many things…)
blood transfusions will likely be necessary between now and the transplant. they typed me specifically last week, and put me on the blood bank’s short list. so far so good.
and no infections, please. i’ve almost no immune system, and bugs subdued in others could be a menace in me. a fever would put me back in the hospital, and my family needs me home right now. we need life to feel as normal as possible, at least for a little while.
i’ll have another bone-marrow biopsy in three weeks to confirm what we’ve found so far, and to gauge how rapidly this is progressing. i am thinking it would be good to pray between now and then that this rogue chromosome would change its mind and my counts would return to normal. there’d be no explanation but God and the prayers of his people, and i would have a new lease on life. i’d like that very much.
many of you have offered to help somehow. thank you. as we understand more what this next year is going to look like for us, we will think through more specifically how you might enter in and make life possible for us. know that right now, it just feels good to live a nominally normal life. that will likely change.
thank you, thank you, thank you for caring, and for being in whatever way “in this” with us. i’ve said this before, but it’s worth saying again: pray and hope, hope and pray. we know that the God who lets us suffer (he does) has suffered Himself (he has) and so we trust him. but we can’t trust him all by ourselves. we need you. so thank you for hoping and praying with us and for us. we are deeply indebted.
in his strength and for his glory,
jeremy (jen and the boys)
btw ~ we may very well start a caring bridge site in the weeks to come. in the meantime, facebook works well, and i will not turn down a friend. so if you want to stay “in the loop,” find and friend me. your presence is appreciated.