Good News: The Roller-Coaster Continues

Reposting this from our Caring Bridge site for those that don't have access to it.


(Note: Please see our prayer requests at the end of this post.  I'll try to make these available regularly.  Thank you all for your prayers!)

Not long after we left Daniel's first outpatient appointment last Friday I received a voice message from the hospital that there was a change to his next appointment (this coming Friday). They had added a "procedure" which would require him to not have anything to eat after midnight, etc. etc.  Unfortunately, that was all they said (no word about what the procedure was or why the change in plans - grrrr). I suspected that they had put another bone marrow biopsy back in since that had been the original plan, but was removed early in the process.

By the time I was able to return the call, the office had closed.  I emailed, but received no replies over the weekend. (double grrrrr).  So Monday, I resent the email and finally received a call back from the doctor.  Yes it was indeed another bone marrow biopsy. She said the results wouldn't affect the treatment schedule for the first month (and there's another due at the end of the first month), but it would be a good "window" into how well he's responding to the chemotherapy.  I'm glad for the advanced look, but not at all happy for poor Daniel who had a harder time healing from the last one of these than he did from the surgery to install the port in his chest.

The doctor then went on to apologize for, in her words, "unnecessarily ruining our weekend".  It turns out that the genetics results that we got back last week were a bit misleading.  In fact, they were a LOT misleading.  On Friday we were told that the lab results had automatically placed Daniel in the "Very High Risk" category and lowered the chances of success from 90-95% down to 60%. It had absolutely crushed us.  It also prompted the visit to Solomon Wickey I wrote about last time.  What the doctors had THOUGHT the lab results were telling them was that Daniel had a fairly rare "gene translocation" which is where part of one chromosome "leg" breaks off and swaps places with another one.  We're familiar with this from Andrea's form of leukemia with the presence of what the call "the Philadelphia Gene" - a translocation of parts of chromosomes 9 & 22.  Daniel's was related to chromosome #8, but when present, indicates a much lower response to chemotherapy. 

However, after further discussions with the staff geneticist, the doctor had discovered that the anomaly was NOT the translocation they were worried about, but rather the presence of a third copy of the entire chromosome #8.  Normally, we all have a pair of each chromosome (23 pairs total) in each cell nucleus.  But in Daniel's case, he actually has an extra (3rd) copy of chromosome #8 in the cancerous white blood cells.  That's about all I know about it at the moment, but this extra chromosome is NOT an indicator of resistance to chemotherapy like the gene swapping issue is.

In other words, he is still in the "High Risk" category with a 90-95% chance of success where they had placed him at the beginning!!  Wooo hooo!!  :)

It was an honest mistake and after I did some research about it, I fully understand the mistake and don't blame the staff. Other than an extremely lousy weekend, it was "no harm, no foul".  In fact, I really see the hand of God at work in it, because it was a great (though extremely painful) heart-check for us to really get down to Who's in charge and how we, as a family, are prepared to deal with bad news.  I'd give myself a C or maybe C+; some work needed there.  But it also generated an awful lot of prayer, and that's always a good thing.

The hardest thing at this point is the roller-coaster ride.  I'm completely emotionally drained.  It was hard on Daniel as well.  Though we didn't share a lot with him, I did share that the news wasn't good and it made his type of leukemia harder to treat.  But clearly he could read our faces and was really down over the weekend as well.  I've been trying my best to get him to share his feelings and open up.  He doesn't do that well.

I find myself not nearly as joyful over this as I would have expected though.  Part of it is probably just being ready to get off this roller-coaster!  But I also know that none of the statistics really mean anything specific to our case.  A higher probability of success is great, but doesn't tell us anything about OUR situation.  What will do that is the result we get this Friday from the next bone marrow test.  It will give us a really good idea as to whether we're in the 90-95% or the 5-10%.  And frankly, I'm dreading it.

My deepest hope and prayer is that our trip to see Solomon Wickey over the weekend was in fact successful and we're really in a 99% category (barring any complications from on-going chemotherapy).  So far, I haven't had any such direct confirmation, but I do believe the "mistake" from the doctors was indeed a very positive "message" for us all - but not the confirmation (or denial) of full healing I've been looking for.  However, this Friday's test will really tell the tale.

SPECIFIC PRAYER REQUESTS:
On-Going:
Above all - that the lessons available to us all in this trial would not be lost or minimized, and that our wonderful God would be glorified through it all.
1. Full healing for Daniel and direct, clear confirmation to Dad - whether supernaturally, or through docs / test results.

     If the above is NOT in God's immediate will for us, then...

2. Daniel's blood counts (red, white, platelets, & hemoglobin) will remain high and even get up into the "normal" levels
3. That Daniel will NOT get any type of infection during the course of his treatment (while his immune system is compromised)
4. That the side-effect of the chemotherapy will be minimized (ravenous appetite, hair loss, immune system suppression, damage to internal organs & other tissues, etc.)
5. "Love, joy, peace, patience, goodness, kindness, gentleness, self-control" (you should recognize that list), along with strength, courage, faith, and hope for all us.

Current Issues:
6. That Andrea will quickly get rid of her cold, feel better, and the rest of the family will not catch it (Daniel, Tim, Dan, Sherry)
7. Daniel's bone marrow test on Friday will show very positive response (few or no cancer cells in the bone marrow)