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

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!

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.

The Wait Isn't Over

Our follow-up appointment this week was not as favorable as we would have liked.  The biopsy last week was a 'fail' and as a result will have to be repeated.  My heart sank after hearing this news.  They were able to remove a good bone chip sample, but apparently there was not enough of the marrow substance available to do the in-depth testing needed.  From what they could see, it was determined there were no 'blasts' present on the slides from the aspiration of her bone marow.  When a higher than normal ratio of blast cells are found it is usually indicative of the common blood-related cancers.  This is a discussion 'first' for us as it pertains to blasts, but we know certain medications taken during our treatment plan can increase the probability of certain blood-related cancers, so it was good to speak and rid ourselves of any additional madness.

It is disturbing to imagine having to go through another bone marrow biopsy.  It took a lot to sit in the room while they performed the biopsy. Thank goodness Mireya is anestisized.  Sitting through it again is not high on my list of things to do, so perhaps I'll 'sit out' of that particular portion of the procedure when/if it is necessary to repeat. Mireya's counts have also decreased this week.  We were hoping to see some sort of rebound and that her cell lines would increase if only in small increments. Without the sufficient test results, the medical team is at a loss of what is causing these problems. We were pretty much off the Aplastic radar and placed in a rotation to ride this out for another few months, remove the Hickman and then come in for routine follow-up to track our success. The fact that her counts have decreased and there is no evidence of a virus or infection is puzzling.

Upon further review of Mireya's labs over the last several weeks, and the downward trend of certain counts, the Head of Pediatric Hematology & Oncology, decided she would like to first give Mireya a IVIG infusion to see if possibly that will jump start her counts to increase.  We did two rounds of the IVIG close to a year ago with no success, but at that time Mireya's body was not producing or holding any counts consistently without continual transfusions.  Dr. Godder believes it could be ITP.  ITP was the initial thought when all this started until about two weeks later when we saw significant drops in her white and red cell counts. It wasn't until after those results that she was diagnosed with Aplastic Anemia. We're not 100% convinced it's ITP as ITP only affects platelets, especially with the dip this week in her hemoglobin count.  We are open to trying the IVIG and see if it makes a difference before repeating the Bone Marrow Biopsy.

Many of you know Mireya's Medical team submitted her to the Make A Wish Foundation.  The Make A Wish Foundation is an incredible organization that grants wishes to children battling life-threatening illness.  Mireya was approved for a wish and would like to go to Disney World to meet Princess Aurora (a.k.a Briar Rose and ultimately Sleeping Beauty).  This trip is scheduled within the next several days.  It has not been determined if we can still go.  Based on this new turn of events, the ability to travel for now is up in the air literally a day or two before we're to board the plane.  Mireya's health is the of the uttmost importance.  We consciously decided not to tell the children about the trip when we found out several months ago. One, anything could happen (tada) and two I really didn't want to be asked daily 'is it time yet'.  However,  Make A Wish and a awesome company in Chester, Cellular Sales  threw Mireya a 'Send Off Celebration' a few weeks ago. Mireya, is now fully aware she's scheduled to go to Disney World shortly after her birthday and is really looking forward to it.  I definitely have a lot to share about the Send Off and how amazing Celluar Sales in Chester is.  Ironically, this entire downward sprial began the morning after that celebration and I've not had the chance to share how incredible of a night that was for us (more to come, so look out for that post soon).

The IVIG is scheduled for tomorrow on Mireya's birthday.  Not the way you want to spend your birthday, but trust me we will celebrate BIG when she gets home.  Reya will have to be retested with 72 hours following the test and we will go from there.  If there is no significant increase in the counts, the team plans to repeat it a second time. It is not uncommon for a patient not to respond after just one treatment. This is where it may get tricky as far as travel timing.  We do not want to have issues that require medical attention or transfusions while we're out of town, nor do we want fatigue to be an issue for her with a hemoglobin level that is dropping.  It is possible to give Mireya a blood and platelet transfusion prior to going to Disney to tide her over through the trip. We're believing we'll have positive results next week.

If there is not a favorable response, then we repeat the bone marrow biopsy to determine the cellular makeup of her body. Specifically her cells vs those given to her by Jalen.  If all else fails, she will have to receive a 'boost' of cells from Jalen.  This procedure would not require her to go through a full transplant with chemotherpy and the full scope of meds again  It most cases, the 'boost' has proven successful when a bone marrow recipient has exhibited these issues and other treatment options have not worked.  Jalen on the other hand, would have to endure the same process to harvest his bone marrow.  I'm hoping we don't have to go this route because I really don't want Jalen to have to go through this again. However, I realize God gave us Jalen as a way out and we are thankful we still have her brother to draw life from for his sister.   Continue to lift us up as a family.  This has been an emotional pill to swallow, but we know nothing is to hard for God.  Even as our emotions fluctuate and we struggle with finding ourselves in this place right now, we know where our trust lies and our faith has not wavered from that truth.

Be strong, all who wait with hope for the Lord, and let your heart be courageous.  Psalms 31:24

Bone Marrow Biopsy

During our visit to the clinic this week, Mireya's counts remained virtually the same.  There was a slight reduction in her hemoglobin and a small rise in her white count, but relatively speaking they were hovering at the same mark.  For now she has been placed back on several of her medications.  It was a very long day and the bone marrow biopsy was quite an ordeal.  We were asked to arrive at 8:30am, but the procedure did not start until almost 1pm.  I was unhappy about the lapse in time because Mireya had not eaten anything since the previous night and could not eat or drink anything until the conclusion of the procedure.  So most of that time was spent waiting and creatively finding ways around Mireya's request for food.

It has been a long time since we've been in the Fishbowl.  We started out in the Fishbowl for counts and 'the cream'.  I say it that way because in the past I've seen the Nurses ask specific children if they wanted 'the cream' prior to their labs being drawn.  'The cream' is basically a small piece of gauze slathered with a numbing solution which is then taped to the area that will be saying 'hello to my little friend the needle.'  It immediately clicked that 'the cream' is offered to kids with ports (which is beneath the skin), prior to their ports being accessed. Mireya has the double lumen hickman, so we never had to received 'the cream' until now to help numb her hip. 

I can't imagine how a numbing cream applied at 9am lasted or made a difference at 1pm, but I'm happy that Mireya was anesthetized for the procedure.  By the time Anesthesia arrived, got set up and the Medical team and Chaplain was assembled, we were about seven strong physically in the room.  Mireya was out in less than a minute.  I watched them begin to pull out all the instruments to perform an aspiration of the marrow as well as the removal of a bone chip.  All I could do was close my eyes, bow my head and pray.  I was about a minute into my prayer when the Chaplain whispered in my ear that he wanted to take a moment to pray with me.  We sat in agreement and silently asked the Lord to oversee everything going on in the room.  At that point the 8th was in the space and I was able to let go of my uneasiness.

When Mireya had a bone marrow biopsy done close to a year ago, we were asked to leave and come back in about an hour.  I didn't understand it then, but I do now.  I glanced over as they were trying to get the bone chip and it looked like they were attempting to saw down a tree.  I'm the type of person that 'feels' things even if/when they are not happening to me.  It was as if they were drilling down into my hip.  I just wanted it to be over.  Most of you know that Mireya barely has a hip bone and it just pained me to watch them going for it with such intensity.  It took two attempts by two different physicians to get the sample.  Somewhere through all that grinding, someone attempted to lighten the mood by otherwise engaging our minds and we started talking about Sweet Frog.  I did not realize Sweet Frog is a Christian business and FROG stands for Fully Relying on God.   Who knew?  I had not heard this before, but that's awesome. We've visited Sweet Frog quite a few times over the last few weeks.  I've been having a lot of Fully Relying on God moments.  Sweet Frog has been a treat, a reward, and a anything else we could categorize it as (anything but a stressful eating indulgence).  All bets were in that Mireya definitely deserved a trip to Sweet Frog after enduring this procedure and so did Mommy for having to witness it!

The team finally completed the biopsy close to 2pm. We were allowed to leave once Mireya woke up and bounced back.  Within about 15 minutes, she opened her eyes, yawned and stretched as if nothing had happened.  It was apparent that her hip was very sore as she continuously reached for it.  A few rotations of Tylenol really helped to ease the pain.

So for now we wait..did I mention waiting is over-rated.  As the saying goes, good things come to those that wait, but the bible encourages us in Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.  Continuing to put all my faith and trust in the Lord for my strength and to see us through victoriously.

He Lives

As I drove by, I totally got it, but I had to drive back and get out.  Tears streamed down my face as the gentlemen (guards) proclaimed this is 'all for his glory'.  Trust me the guards were not proclaiming his glory on that night, but we know the story well, He is no longer in the tomb, He is Alive and Risen.

The 'visual' encouraged me.  This has been a long week.  This showed me that 'late in the midnight hour' God is going to turn things around and what it looks like, is not what it is.   We serve a Risen Savior who paid the ultimate price for our salvation and as Elder Jackie Bruce ministered last week at Bible Study, 'health and provision' are a part of the covenant.  We know that Mireya's health cannot dwell in this space long and despite it all the enemy cannot have my joy, my peace, or deter my belief or faith.

Thank you to Good News Free Will Baptist Church.  If you're in the area you definitely should ride by and take this in.  Thank you Lord for allowing me to travel this road, at this hour, to witness such a powerful depiction of the ultimate sacrifice.  It truly blessed me!