Thursday, May 31, 2012

Holding On with Faith

This past week was rough.  Reya's platelets were shot and she had to get her first platelet transfusion since July of last year.  Based on the amount of bruising she has had, I thought she might need them. The optimism her medical team had is waning.  Having her counts so low was really a blow to recent suggestions that her body was making a turn around, but we've remained prayerful and hopeful.

One thing we discussed with the Medical team was Mireya's Tacrilimus medication.  The prescription we received just prior to our trip seemed to be a very concentrated formulation.  It was apparent because of the sediment at the bottom of the bottle and it took a lot for us to keep it mixed.  It was a pain, but we noticed that her counts for that two week period were at the highest they had ever been all the way across the board.  When we returned, we had to get a new prescription of the Tac and her levels over the last few weeks have not been good.  In our minds, the only difference has been the medication.  So I called Westbury Pharmacy to 'share' our theory. Long story short, there are two ways to make the medication.   It is either compounded with tacrilimus powder or the actual tacrilimus capsules.  Based on my description the Pharmacist believes the bottle we had in Florida was mixed with capsules, which is not the preferred way to compound it because it requires a lot more work and steps to make. After checking the computer it was confirmed the medication we had while away was made with capsules, and every other time it's been made with the powder.  Imagine that, God is still revealing possible answers and solutions to that which cannot be figured out by the Specialists and Physicians.  So I asked them to humor me and make a bottle with capsules for Mireya, because we only have about 10 days to see a change in her counts or we would be facing another Bone Marrow Transplant.  The Pharmacist 'sounded' skeptical, but wanted to do whatever would make us happy.  She said 'We're the Pharmacist and our preference is to make it with powder, but Momma knows best'.  I'm having visions of Mother Gothel singing her jingle on Tangled.

We immediately started taking the new Tac anxiously awaiting our upcoming appointment to see if there would be any improvement.  We arrived in clinic and it was a matter of fact meeting of the minds.  I thought we had about 4-5 more good days, but yesterday was D-Day. Reya's counts would determine if a second transplant was necessary via this boost.  We talked about the Bolton theory of medicine.  The Head of Hemoc took a few minutes to politely listen and consider the probability of the 'mixture' being an issue, but she doubted it was a factor.  We're all on the same page.  No more time can be wasted. We cannot allow Mireya to dwell in this space any longer.  This 'boost' which up until this point has been a very casually discussed process was explained full spectrum and is 'on deck' as our next option.  It will entail a lot more than I understood initially.

Jalen's cells would be accessed through his blood as opposed to the bone marrow which will require him to have a port or a pic line inserted for the duration of time his blood is accessed (approximately 2 hours or more). It would be surgically inserted that morning and possibly removed the same day if all goes as planned.  Otherwise it will be left until it is deemed the boost was a success. I was of the impression Mireya would not have to undergo chemo, but this procedure will require some dosing of chemotherapy.  We will need to be on the Bone Marrow Unit for about 7-10 days.  This is a lot better than several weeks, but again my original expectation was very different than this newly painted picture.  You cross each bridge as you need to...perhaps in my mind and heart I wanted it to be a simpler process with less of an impact all the way around.  We're fighting for my girls life and we'll do and go through all that is necessary for that to happen.

The first count to come back was Mireya's platelets and they were up. Immediately there was bewilderment at how her platelets had increased, especially since she received a transfusion last week.  Platelets only last for about 7 days.  We were past that time frame, which means her body is making them and they have increased in one week's time by eight thousand.  About fifteen minutes later her other counts showed up.  There was a small drop in her red cell count, but other than that, all the other counts are up.  The TAC level almost doubled.  All I can say is God will work it out.  Don't ever count yourself out, even when it 'feels' like your hanging from the last rung of the ladder and your feet are dangling in the wind.  Trust your instinct, intuition or what we know as the soft, nudging, persistent voice of the Holy Spirit to draw our attention to the answer or what was not obvious.  The Department Head came to me before we left to tell me that we really have given her a new way to look at things and that given a similar situation she would definitely look at 'how' the medication is compounded because it could be a determining factor for another patient.  Thank you Lord.  Even in the midst of our situation, being armed with what seems to be a small thing could be so helpful to someone else.

Thank you for another victory!  Thank you for another week!  We trust and believe that Mireya's body will continue to create and increase in counts. We're looking forward to next week's visit and expecting another praise report.  Continue to pray for our family and for our sweet Warrior Princess.  We're still standing on the word of God.

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

Tuesday, May 22, 2012

Still Fighting

We're back on the rollercoaster.  Last week we had very encouraging news as it was readily apparent that Mireya's body was attempting to rally back from this sudden downward turn.  Our last appointment showed decreased counts and over the last several days increased bruising all over.  It's a very troubling visual of what 'appears' to be failing on the inside.  Reya's Tacrilumus was increased to a dose we're not totally comfortable with, but we'll see if it makes a difference in this week's counts.  Overall she's had a good energy level and has been in good spirits.  I'm not a rollercoaster rider, I actually have issues with motion sickness.  There is no thrill in this ride, the ups and downs are draining and the sickness is just heartache from the uncertain and unresolved.  We continue to take it one day at a time, praying Reya's body will get it right and start functioning as expected.  Keep us lifted in prayer.  Despite it all we remain hopeful and know that in the end, we'll have victory!

Wednesday, May 9, 2012

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. 

Wednesday, May 2, 2012

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.