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

Irene & Isabel

Watch out for those hurricanes that are female by description and start with an 'I'. Irene rolled through the East Coast and she caused some drama. The winds picked up, the power went out and trees went down all over town. We're thankful for favor through the storm. Our neighbor has a generator and came over to offer us the opportunity to plug up our refrigerator and few other smaller voltage items. It was a great relief to be able to save our food and have light on when needed. Big props and 'thank yous' to Westbury Pharmacy for braving the early hours of the storm to deliver Mireya's medication. Phone service was very sketchy, but I managed a few phone calls and text messages, but really enjoyed catching up on my Nook books. We listened to the radio for updates and coverage of the storm, but switched it up and got the nightly dance par-tay in. We had a variety of things to keep us entertained. The kids enjoyed board games, play dough and good ole' educational fun on the Leapsters for the mad sum of 12 AA batteries.

Jalen has become fascinated again with dinosaurs after a two year hiatus. You will often find him running around on all fours as if he's velociraptor or gallimimus or any of those other fast moving dinosaurs, and he is quite fast at doing it. Daddy and Jalen had what I'll dub a i-ran-ta-sauras race. Daddy had to show him that he 'could' do that too if he wanted to. It was hilarious and caught on tape!! We have a gas stove so cooking was not a major issue. Noodles, spagettios (Mireya's new favorite) and hot dogs were favorites for the day. The night ended with a big sleepover between the bed and futon. Overnight, I heard a tree drop close by, but it was so dark it was hard to figure out exactly where it fell.

Hearing that tree fall took me back to several years ago when Isabel came to Richmond. We were living in a different part of town at the time. She was a much more fierce storm than her home girl Irene. Isabel wrecked shop. Not only did she shut down power for days, but she shut down highways, byways and most any other way you wanted to go through. I'll never forget the sound of trees falling all around us. It was very frightening and unnerving to see trees snapping in half or coming up at the root. After a day or so the neighborhood had several block parties. Neighbors were firing up their grills and cooking out for anyone and everyone that was interested in stopping by for a meal. Clean up from that storm took quite a bit of time. It was big business and very lucrative for companies that did tree work or were equipped to help with the debris or damage from Isabel.

We woke up to chain saws buzzing all around us. I even saw a young man riding his bike with a chainsaw in hand looking to 'help' and 'earn' some cash at the same time. 85% of the city lost power and many are still without it. It's so easy to take the simplest necessities for granted. Irene came in swiftly and then left us with a beautiful day of sunshine. Sunday morning reminded me of time spent at my Godmother's house as a child. Blueberry pancakes and bacon for breakfast. No television, no hustle and bustle, just a quiet stillness accompanied by a soft, gentle (and much needed) breeze.

We took the opportunity during the daylight hours to do some tasks that were made for days that you had nothing but time on your hands. We were able to get some things accomplished and organized as we waited for our electricity to be restored. It is estimated that our power will be back on by Wednesday afternoon. Prayerfully it will be on before then. We are so thankful for God's hand of protection over us through and during this storm and we continue to pray for everyone's safety.

Psalm 4:8 I will lie down and sleep in peace, for you alone, O LORD, make me dwell in safety.

Three & 1

This translates to Mommy and three little ones at an appointment today and everything went GREAT! Mireya's counts are increasing. We still have a couple of areas that are holding their ground, but lower than expected. We continue to work through the dosing of her meds hoping to strike the right balance to see all of her numbers in a favorable range. A few of the medications require compounding which all pharmacies are not equipped to do. At least not for quite a few of hers. Westbury Pharmacy is great,but a bit of a hike. They are open every night until 11pm and deliver for a nominal fee of $3. It doesn't hurt that they have a 'Cookout' just across the way. That banana pudding milkshake is enough to make you want to drive over there as often as necessary. So the way I see it is that $3 delivery is saving me a couple of dollars and lbs.

Mireya has developed a bit of an annoying cough and a runny nose. We're watching her closely and believing we'll have no fever associated with this. Reya was her usual super helpful self. Helping to draw her labs and flushing her lines. She let us all know that 'flushing her lines makes her excited'. I just don't know what to make of this fascination with flushing her lines. Perhaps we have a future Dr. on our hands. Today was our quickest appointment to date. God answers prayers because this was not the day for a long appointment with three kids. The children were at the threshold of getting antsy and suddenly we were released. We didn't even get through the entire Barbie "The Nutcracker" today. Thank you Lord for orchestrating the flow and structure of this one so perfectly.

Ms. Claire stopped by to see us and she brought Mireya some really cool sparkly stickers. By the time we reached the elevator those stickers had been pretty evenly disbursed to each sibling. Continue to keep us in your prayers especially this week as we battle through this cough and other symptoms. God is faithful and continues to carry us through. Moments of weight and heaviness come, but he always shows us a bright spot and that is what we hold onto.

1 Peter 5:7 Give all your worries and cares to God, for he cares about you.