The Next Step

Matt & I met with the doctor & nurse educator today & here's the lowdown:

Although Jill has a chromosomal abnormality (11q23), she may not be in the "high risk" category if, at the end of this cycle of chemo (in about 2-3 weeks), they find less than 15% blasts (leukemia cells) in her marrow. The doctor seems to think she will land in "intermediate risk" category as she responded really well to chemo right away.

Anna had blood drawn yesterday (needle in her arm for about 2 minutes while he filled up 3 vials of blood...she sang, you guessed it, "Ding Dong, the Witch is Dead" until it was over, smiling the whole time....what a TROOPER!! Our nurse was hella-impressed!). They also drew our blood, NOT because we are likely to match, but rather to get an idea of the genetics behind her bone marrow type, which will help them track down a donor (if Anna is not a match) through the National Donor Marrow Registry (http://www.marrow.org/). There is a 25% chance Anna will be a match, and IF SHE IS, we will go to transplant as soon as our doctors & the transplant team at either UCLA or CHLA (we've not decided on a hospital yet) are ready to move forward....she MAY finish up all 5 cycles of chemo, but will likely go to transplant after the 2nd or 3rd, once they are certain she is in remission. More on that later...too much info to go into a "maybe".

IF Anna is not a match, Jill will finish up the 5 cycles of chemo (taking us to at least April), going home for 3-6 days each month in between cycles (10 days of chemo, 2-3 weeks of "recovery" during which her White Blood Cells rise back up), and we will wait to see if she relapses.

IF she relapses, we go to transplant from a Matched Unrelated Donor (MUD). We have a "pretty good" chance of finding at least one unrelated match as 80% of the people in the registry, at this time, are Caucasian, and (didya know???) bone marrow follows ethnic lines!!

Bottom Line: Let the bone marrow drives BEGIN! Even if Anna is a match (most ideal), Jill's body COULD reject it & we would need to go to a MUD match. They will be looking at the Bone Marrow and Cord Blood Registry (so bank your new baby's cord blood for yourself, and pay a yearly fee....good insurance for you & your family....or donate it!! Don't let it go to waste!!).

If you are now questioning whether or not to participate in the drive because you are not Caucasian & there is no chance you would be a match for Jill, please read carefully....this is probably the most important bit of information I have or ever will share in my life (and unlike most of the nonsense I spew, this is NOT an opinion):

Leukemia is not a White Man's Disease.

Leukemia kills.

Oodles of people (much like us) have NO chance of survival if they do not get a donor.

We have met these people. They are real.
They need you (Hispanics, Asians, African Americans, those of "mixed" descent).
They have babies, toddlers, children, teenagers, hanging onto life.
HOPING. PRAYING for a match.

We would be elated if one of you, our friends, our family, people we don't even know from our community, are a match for our baby. But please do this, not just for Jillian, but for the person in Texas whose LIFE.....YOU.....may SAVE.

Here's what it entails.....a cheek swab & processing fee ($50, but we are working on getting it reduced or waived). IF you are found to be a match for someone, you will need to take a few days off of work & endure (depending on your pain tolerance) a "painful" procedure of having a needle inserted into your hip bones, repeatedly, to draw out as much marrow as is needed by the recipient (in Jill's case, not much). You will be sore afterwards for up to a week, maybe more. All of your medical costs will be covered, but not your time off work...unfortunately, the donor recipient is given no information on who you are....if there is a way for you to contact them, I'm sure they would gladly cash out their 401K & deposit it into your bank account.

I'm not about guilting anyone into this. If you don't do it, we won't know! I just want everyone to consider what these little kids go through having cancer and weigh THAT against the inconvenience & discomfort of passing a little bit of your life on.......

I love each & every one of you....I'm loving more and more every day, and seeing so much good around every corner, and being faced with challenges (as simple as sleeping through blaring soap operas on the Telemundo channel) that I never imagined I could conquer!! It's not fun, but it's rewarding. I am so much stronger already. You, as a community of friends & family, have greatly contributed to that strength.

More to follow.......................................................................................................................