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.

Glory Glory

We were in clinic today and Mireya was taken off of all medications.  In my best Fred Hammond voice I shout 'Glory, to Glory, to Glory to God'.  This is such a triumphant moment. Her white count had an incredible high a few weeks ago as we tapered her off the Tacrolimus.  It has since dipped considerably lower, but still remains within reach of a low norm.  Overall, her counts are favorable and not of major concern because she is doing so well.  We are looking forward to getting out of this season of colds, viruses and bugs, so we are still very mindful of what and where we do things, but today was a huge milestone.  We've been upgraded to a monthly clinic visit and that is super exciting.  I must admit as my daily medicine reminders went off it felt odd, yet awesome to 'dismiss' them and then promptly delete them.  God answers prayers!!!

Mireya's health continues to increase and we are optimistic and prayerful that it will continue to do so.   Next on the agenda is removing the Hickman Line.  The plan is to give her body a few months to adjust and stabilize, particularly the white count and we'll schedule the procedure to have the line removed. Thank you for your prayers and thank you Lord for touching and healing Mireya's body.

We continue to pray and trust God for our friends and children everywhere battling illness, enduring treatment and incredible odds.  Precious lives are hanging in the balance.  It is impossible to predict how things will turn out or to have someone tell you based on their experience or opinion (medically or otherwise) what the outcome will be....keep fighting, keep trusting, keep believing and know there is power in prayer. 

Day 43

Mireya had a great appointment today. She did her Nurse Betty bit (took her own blood, prepared her labs and flushed her lines) but then tried to do a disappearing act when it came time to change her dressing. We managed to get through that without incident. Mireya continues to have favorable progress. All of her counts have increased. Her plates are almost 270k. Thank you Jesus. Her white and red counts are up and her magnesium level is showing a slight improvement. I believe as Mireya continues to take the magnesium via her line and orally we will see that number increase. We saw Allison in clinic today and her counts are fluctuating quite a bit, so please keep her in your prayers. We are believing for an increase in her white cell count. Mireya's medical team is very pleased with where she is and as a result we will only need to be seen in the clinic once a week going forward. I'm so excited. 57 more days until we hit the 100 Day Mark. We are trusting to reach this milestone with no issues or incidents.

Thank you so much for your continued prayers. God is so good and we're so grateful that Mireya is continuing to do so well.

Psalms 100 (KJV)
¹Make a joyful noise unto the LORD, all ye lands. ²Serve the LORD with gladness: come before his presence with singing. ³Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. ⁴Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. ⁵For the LORD is good; his mercy is everlasting; and his truth endureth to all generations.