HE LICKED IT! NO MORE LEUKEMIC CELLS!!!

Just got word...
BMB results came back... no more leukemic cells in his bone marrow!
{{{Suzia's doing a happy dance around the house...}}}

So, now he'll stay a week at the hospital, while his white blood counts get back to stable numbers. Looks like he's in the clear... Let's hope his remission lasts a long, LONG time!

Just thought I'd share the happy news!

Right now, he just has to finish his antifungal meds, and start building up his white blood count. They are going to see how quickly his body rebuilds on his own, so he's not on any regenerative therapy, and he may not need to be. More details as I learn them.

National (Bone) Marrow Donor Program - NMDP

From the get-go, I've had people asking me questions about possibly donating blood and bone marrow for Stefan. His fan club told Daniella that at this point in time, it was not necessary to have their own blood "banked" for his use, which is what other A+ types would donate for. So, thank you to all who asked, but it has been, to this point, unnecessary. Not that "at this point" we're now asking for blood donations. Please donate blood, to the American Red Cross, to Lifesource (IL blood donor program), or at whatever blood-drive you usually donate... There's always a need for donated blood, even more so in the aftermath of Katrina.

Now, to the heart of the matter of my post... Bone Marrow. Stefan will, at some time in the future, need a bone marrow transplant, or more specifically, a stem cell transplant. The stem cells are harvested from bone marrow, hence the terms: bone marrow donor (potentially, you) and bone marrow recipient (Stefan). The hospital's program will cross-match full siblings of their patients to look for possible donors. Bruno and Bo went in for their blood draw at the hospital this morning. Any other family members could be cross-matched through the hospital's program - which would match only for a donor for Stefan - at the expense of the donor. The out-of-pocket expense could run in the thousands. That's right... $1000s. BUT... there is an alternative.

Non-siblings, family members, friends and strangers could all be tested to see if they'd be a matching donor for Stefan, by joining the National Marrow Donor Program's Registry. I'm going to present the following information in bullet points, as this should make it easier to read.

• This is a voluntary registration; you can withdraw from the registry at any time, with written notice of cancellation of participation.*
• To join the registry, you do NOT have to undergo any surgical procedures; there is just an ordinary blood draw (just like giving blood).
• The out-of-pocket expense to donate through LifeSource is $65 per donor. (I spoke with a representative with LifeSource, Dee Cooper, who told me this is the cost.)
• Start with a phone interview about your health; then set an appointment to go to your local participating LifeSource Center for a blood draw.
• Your DNA is pulled during testing of your blood. Dr. Olga is looking for a "perfect match" of DNA for Stefan's bone marrow donor.
• You can ask that they note that you are seeking to be a possible donor for Stefan Maca, but they will NOT take you as a volunteer donor if you say you will ONLY donate to Stefan Maca. You have to be willing to be a donor for ANYONE you may match.
• Your name and info are logged into the National Registry. You may not be a match for Stefan, but you may potentially be a match for someone else who's waiting.
• There are millions of people on the NMDP donor registry (over 4 million*), and just as many people (recipients) are waiting to receive a transplant. It's fairly common that a recipient may not ever find a matching donor.
• The odds are very high that you can have your name on the registry and never match anyone on the recipient list...
• But... there is a slim chance that you may be the 1 in 100,000 (or whatever the odds are) that your DNA matches someone else's enough to make you both a good match. In that case - if you match someone other that Stefan - you DO have the right to say "No." Your commitment to the NMDP is to "consider donation for any searching patient who matches your tissue type."*
• The NMDP matches donors to recipients to facilitate 130 transplants a month.*
• To become a volunteer donor, you must be between the ages of 18 and 60, in general good health, and not have any blood diseases/disorders.*
• If in the last 12 months, you have had a 1-blood transfusion, 2-tattoo or 3-ear/skin/body piercing, you are eligible to join to program; however, you will be deferred from donating for 12 months from date of transfusion, tattooing, or piercing.*
• The actual bone marrow donation is a surgical procedure, performed under either local/regional or general anesthesia. More details found on the website listed below.
• Just as with blood donation, pregnant women are not allowed to donate marrow during their pregnancy or for a specified length of time following delivery.
• Also worth mentioning... I would encourage anyone who is "in the family way" to consider donating cord blood to the NMDP when the baby is born. The cost to the donating family is nothing - it is FREE to donate cord blood to the NMDP*. Your donation will be for public use. Private storage and use of cord blood is not a free service. See the NMDP website for more information.
• If you'd like to be a volunteer donor in the Chicagoland area, please call Dee Cooper at 847-803-7857. She is there Tues-Wed-Thurs, 7:30am-6pm.
• If you are unable to reach Dee, please call LifeSource at 1-800-486-0680. (You'll have to press 1 for English, then 7 for the Marrow Donor Program.)
• For more information on LifeSource, visit www.lifesource.org
• For more information on the National Marrow Donor Program, visit www.marrow.org . This site has full explanations of procedures, terms, and FAQs about donating. Facts and figures quoted above which I noted with an asterisk* were taken from this website.

I hope this information helps to answers many of the questions you have. For more information, please visit the sites listed. Let me know if you find other sites that are helpful to you on this topic. I know many of you expressed interest in trying to match to be a marrow donor for Stefan. This is the way to go about finding out if you'd be a match. Good luck to us all.

Wed, 9/21 - Waiting for results

11:30am. Stefan's fan club came early this morning and did a sinus flushing, to remove any scabs that had formed (which they had tested for residual fungus, or something like that). Results of both the early morning flushing and the one they just finished have been positive, in that the findings do not indicate the necessity of a second endoscopy. So YAY! The fungus that nearly blew up half of Stefan's face was the fungus, aspergillus. Or astergillis. Don't ask me how to spell it - I just remember that it sounds like 'sasparilla'... So, um... yeah... don't ever suck root beer up your nose or you might need an endoscopy too. (Got a laugh out of you on that one, ;o) didn't I???)

Other than having a sore nose from all the procedures the past four days, Stefan is doing very well. He's in very good spirits. He's keeping up his positive attitude. If his energy level hasn't increased, at least it's not less than what it's been most recently, since he's still making laps around the halls. His appetite has increased somewhat, and he's gained back five pounds this week. How he managed to do that while enduring all the nasal scoping and sinus "exploration" this week, I'll never know... unless it's got something to do with him eating more of the hospital food when he can't smell it? That's my guess.

Stefan's cousin, Ted J., visited yesterday evening, as he was in town on business. Actually, Ted had been wanting to drop in and see Stefan for quite a while, but had to postpone visiting when Stefan had surgery on Monday. The visit went well, and they got to catch up a bit.

Today, Stefan has a small group of family visiting. Bruno, Diane, Bo, Hela and Zosia came for a visit this morning. Bruno and Bo had a dual-purpose visit, as they went to give blood to be tested, to see if they could be possible bone marrow donors. I'm sure Stefan is thrilled to have both his mother and mother-in-law visiting him at the same time while he's in the hospital... what man wouldn't be ecstatic? (said sarcastically). All kidding aside, both 'moms' were getting quite antsy to go see him, especially after he had an operation. It's a surgical procedure, common and short, but to them... it was an operation. So I guess they have to see for themselves that he's okay. And of course, they have to dole out their own medical advice on how/why he got sick (with the infection), what he should be doing to get better, toss in an old wives' tale here, some outdated medical advice there, and some very bad ideas here... and, well, you get the picture. Both babcias think they're somehow qualified to be doling out medical advice, yet they've never attended a day of medical school... hmmmm. Sounds like every Polish babcia I've ever met - they've all got a cure for what ails ya! And I love 'em all!

Okay... so what are we waiting for...? Oh, yeah... results from tests. Well, the lab results came in - he's got that 'sasparilla' fungus...Check out this site for more info - scroll down to "aspergillus sinusitis": http://www.aspergillus.man.ac.uk/indexhome.htm?languages/index.php~main When I was there on Monday, they were pushing amphotericin B antifungal meds, so the course of treatment then was on par with what needs to be done. His MRI results came back: there was no fungal infection that penetrated any of the facial bones, so the possibility of the infection causing any brain damage has dropped to near 0% (nothing's ever fully 0% or 100% in the medical community, is it...). Now, all we're waiting on are the results of the bone marrow biopsy. Cross your fingers here... what we want is a good, low number of leuko-blasts (or whatever the technical term for the darn things is)... zero would be a REAL good number! If it's a very low number (<5%), then Stefan will be considered to be in remission. Which would be awesome news! Dr. Olga said yesterday that his hospital stay may just be another 7 or 8 days. So, God willing, let the results come back with very favorable numbers!

Okay - that's all I got for you right now. When I hear about BMB (bone marrow biopsy) results, I'll post here. Stat. Ha ha... little bit of medical humor there. Must be something in the air today... I'm a bit punchy. Laugh. Don't laugh. Doesn't bother me - I can't see you when you read these posts. If it's funny, laugh. If not, please don't email to tell me. I'll try to be not-so-funny in future posts. --SMK