Wednesday, April 18, 2012

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

Saturday, April 14, 2012

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.

Saturday, April 7, 2012

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!

Friday, April 6, 2012

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

Sunday, April 1, 2012

Happy April Fool's Day?

Today is one of those days over the last few years, I've learned to plow through.  It's April Fool's Day and undoubtedly many will try to pull a fast one over on you.  My kids have even been walking around trying to make me think they've done the unthinkable, but the simple fact they are presenting such outrageous scenarios allows me to go along until the punch line.  'April Fool's Day' as they burst out in laughter. 

Today is also the birthday of one of the finest men to walk on this earth.  He's was taken away to soon and he is greatly missed.  Days like this are often hard to maneuver through.  Just as the day of his eternal passage to heaven, my parent's anniversary, and all the family holidays. Don't get me wrong we get together and it's still an awesome occasion full of love, laughter and fun, but we especially enjoyed spending and celebrating this day together as a family.  Today is a reminder there won't be the usual gathering, but we know he's having an even greater celebration in heaven surrounded by so many he loves.

How I wish he was here to see the children grow up. I wish he had the chance to meet Ms. Makinley.  That one would have been his match.  She's just the right amount of sugar and spice!  To see Mireya, the quiet, observant one that could always make him smile, fight one of the greatest fights ever with such bravery, grace and poise.  To see the bright, sweet, and loving boy Jalen is (the first boy in the family), and to witness Paris 'matriculate' as he used to say and take college life on so beautifully. 

Words fail to express the magnitude of your absence in our lives.  Your life, your wisdom, and your example of being all you could be for your family has equipped us to do and be the same.  You are missed and you are loved.  We do all we can to to keep your legacy and memories alive.

My father didn't tell me how to live; he lived, and let me watch him do it.

~ Clarence Budington Kelland