Turning Around

We've been in clinic twice this week for counts and results of Mireya's bone marrow biopsy.  On Monday her counts showed a small improvement.  The information on hand from her biopsy showed all three of her cell lines present along with the cells of origination (mother cells) which is a really good sign.  The final report would show us the make up of those cells either boy (Jalen) or girl (Mireya) and hopefully give us an indication of what or where the issus lies.  Mireya's white count increased and her hemoglobin has held steady. Her platelets have continued to go down, but at a slower pace which tells us her body is making them.  This was very encouraging because we expected the possibility of a platelet transfusion. We hope to avoid any transfusions if possible, because as the body receives transfusions, it takes on the genetic makeup of the blood or platelet product and can cause issues should another transplant or a 'boost' need to take place.  We left clinic with favorable news, one step closer to figuring out this puzzle.

In today's appointment, we received the final report from pathology which showed favorable percentages of Mireya's cellular makeup.  All her counts were up, even the platelets which is typically one of the last lines to rebound.  Prayerfully they will continue to increase.  There are a few theories as to why this has occurred, it could be that Mireya was taken off the Tacrilimus prematurely. Tacrilimus is also one of the most toxic medications in Mireya's regimen and we were quite pleased when she was able to come off of it. Tac has been used to suppress Reya's immune system post transplant. She has been doing exceptionally well up until this point and there was no indication that taking her off of it would suddenly cause the small percentage of her original cells (girl) to destroy everything it deemed 'foreign' or as bad in her system.  Wow, even on a cellular level, girls don't go down without a fight.  So this is the one instance where I'm denying GIRL POWER and I'm cheering on the boys.  C'mon boys you can do it, put a little power to it! Go team Jalen!

Another thought is she contracted an unknown and undetected virus that her anti-viral meds are not equipped to address and as a result her body identified those cells as a threat and in turn started destroying all cells?  So we continue to try and figure out what has caused stress to her bone marrow to the point that it stopped functioning optimally.  We also discussed how similar instances have occurred in other patients when Tacrilimus has been removed or decreased.  It is a fine balance of timing and dosing, so Mireya will be monitored via labs and counts more frequently, but it appears her body is working to recover.  Thank you Lord!  Additional tests were run today to identify any possible viruses not detected previously.  There has been less bruising and petechaie present and that is also a good indication of a turn around.  God will turn it around for the good! We are believing Mireya's health is increasing and her body is repairing itself.  We're still standing on Phillipians 1:6, and we know that everything is working together for our good.  Thank you for continuing to keep her and our family in your thoughts and prayers.

God is Sovereign and is faithful to complete every good work he has started. 

Ready, Set, Go!

It's been a long and eventful few weeks.  36 hours prior to our trip we were told we would not be able to go (sigh), but received a call later that day that we could (hooray).  So less than 30 hours before our scheduled flight we were coordinating, strategizing and preparing to go to the magical place where dreams and wishes come true.   God will work it out and make a way!

Mireya's counts continued to decline following her first IVIG, so a second transfusion was scheduled the day before we left.  Nothing like sitting for several hours in clinic when there was so much to do at home, but we need to cross all the t's and dot all the i's to see if we can get these counts to turn around.  In order to test the effectiveness of the IVIG, labs needed to be drawn within 24-72 hours after the infusion.  We made our way to Phillips Hospital in Florida to have Reya's counts checked.  Her white and red cell counts increased but the platelets continue to tank and as a result she continues to have some bruising and petechaie. We had an AMAZING time away!  It was so wonderful to not be consumed by procedures, clinic visits or illness for several days...just fun, smiles and incredible memories.

We arrived home very late last night and were in the clinic very early this morning for Mireya's second bone marrow biopsy.  I was in the room, but choose not to watch the procedural portion of the biopsy.  One time is definitely enough.  We expect to have some preliminary results by Friday and hopefully some plans on our next steps. 

Continue to keep us in your prayers and check back for the full monty on our trip to Disney.  Love and blessings to you all.

Highs and Lows

We've spent the last few days in and out of clinic to determine why Mireya's platelets have taken a nose dive and she has started having petechiae and bruising on her body....a moment of silence and deep breaths are needed here because seeing this hit us like a ton of bricks.  We had not imagined after what has been deemed a successful bone marrow transplant, that we would see the signs that started us on this journey eleven months ago.

This is also puzzling to our medical team. The best we can imagine is a virus of some sort is destroying her platelets.  Mireya's platelet count has declined over the last few visits, but have remained in a healthy range.  At one point they were 375k and they are now 50k.  50k is better than the 15k and lower that required the continual platelet transfusions, but platelets can be depleted quickly and we're uncertain of when this steadier decline began. Counts have been checked, tests have been initiated and Reya will have to undergo a bone marrow biopsy (for which she will be anesthesized) next week.  The bone marrow biopsy will be done to evaluate the bone marrow function.  It will also evaluate the effectiveness of her meds and assist in determining the reason behind the low platelet count.

Chimerism testing (engraftment analysis) is also being conducted. This test involves identifying the cellular make up of Reya's system.  This is a very significant test that essentially will show boy, girl or a mix of both. Our prayer is boy will be prevalent which would be target since Jalen was the donor. Girl would indicate Mireya's cells are wrecking shop on the success of the transplant.  A mix of boy and girl would be acceptable and can exist successfully as long as there is a higher percentage of boy.  There are a few ways to look at it medically, but the answers will come after the results of all these test are compiled and we know exactly what is going on.  A full reconstitution of the immune system following a transplant can take up to 19 months.  We are over halfway there.  For now, Mireya has been placed back on several of her medications.  We're unsure if she actually needs them, but the team would rather have them in place to support her system as opposed to waiting until next week and determining we've wasted several days by not doing so sooner.

I'm a pretty patient person, but waiting for test results challenges my patience and resolve.  On the plus side projects have been moved along, things have been organized/reorganized and my house is super clean.  Anyone else move into 'git r done' mode while feeling helpless as you wait?  You have to do something with those emotions and thoughts that try to consume you.  May as well be productive and exhaust yourself in the process.  The Drs. mentioned a plus we have on our side is 'we still have Jalen'.  We know of several instances where sibling donor transplants have failed, but it is usually identified soon after the transplant.  Jalen is a perfect donor match for his sister should we have to go that route.  Despite having gone through it already and knowing all the variables, we DO NOT want Jalen, Mireya or our family to have to go through this part of the process again.

God is STILL working this out. We've been shaken, but remain grounded in our faith. I don't believe we've come this far (by faith) and with such success for this to fall apart. There is power in prayer and we thank you for your positive thoughts and prayers as we wait and continue to trust the Lord.

God is Sovereign and is faithful to complete every good work he has started. Philippians 1:6