Amazing Grace

We received a call this afternoon from our Nurse in clinic to schedule the removal of Mireya's line.  It will be taken out on Friday.  Tears filled my eyes and I wanted to jump through the phone and hug her tight.  THANK YOU LORD!!! There are no words to express our happiness. After 22 months, Reya will finally be free of this Hickman Line. I remember the day she got the line placed.  It took a lot for me to get comfortable seeing it let alone take care of it everyday. I will not miss that responsibility at all.  

It is a true blessing Mireya never had a infection or any complications with her line...it has served us well.  The procedure will require her to be placed under anesthesia, but the process should be quick.  Keep Mireya and everyone involved in the procedure in your prayers.  Thank you!!!

We're so Excited

And just can't hide it......you know the rest (Bless the Pointer Sisters).  Mireya has been doing fabulously.  Her counts have remained stable and were the best they have been collectively in the last 22 months.  God is so faithful!  She no longer has to wear a mask! I loved seeing Reya's face light up when she heard this.  She was so excited she grinned from ear to ear. We've also eliminated a few more medications, so we're down to just a handful now.  Mireya will physically be able to go to school in March AND she will also be getting her line removed soon. She also took the last of her immunosuppression meds this weekend. That has been a frightening prospect for us.  When she was taken of the Tac last year, the remaining cells in her body 'remembered' their original assignment and started attacking and destroying 'all' of her cells.  As a result of her bone marrow's struggle to create new cells, she became dependent on blood and platelet transfusions.  Once our remaining options were exhausted, it was necessary to repeat the bone marrow process.  This time, we're going all the way...straight to victory!!!  I don't believe he's brought us this far a second time to fail.  My heart skipped a beat with joy that the end is in sight.  We have six, count them 1, 2, 3, 4, 5, 6 more appointments in our active treatment.  Mireya will have to get stuck when her blood is drawn for labs, but what a trade off.  No more contraption stuck in your neck, taped to your chest, hanging down to your belly button.  No more daily flushing of the lines, IV meds, or weekly dressing changes.  Scratch complications or worries about infection via this line off the list.  Hallelujah!  We'll take the six sticks!  Mireya is so happy about this.

 

2013 is going to be an exceptional year for #TeamBolton!  There are no words to describe how it feels.  During the summer I was riding through our neighborhood and had a revelation.  I smiled (actually chuckled) and said 'thank you God'...'thank you for trusting us enough to walk through this'. I never imagined I would say those words, but I truly believe God knew he could trust us to walk this out with a magnitude of strength because we knew he was our source.  This doesn't mean we're anything super special because God is no respecter of persons.  It also doesn't discount the many times we were alarmed, afraid or feeling low. We knew we had no other choice but to hold on to our faith and God's hand. And with that came a level of peace and assurance that he would see us through.  We've learned these God allowed experiences are not only for us, but for others. The love of God is far reaching...however it reaches or touches you.  We have grown through this process and our faith has increased even more. We never imagined our lives would be turned upside down back in 2011.  We didn't know what we were up against.  We were afraid of this thing we knew nothing about and for our daughter's life, BUT God.  He showed us how much he loves and cares for us through the hearts and love of so many (family, friends, church, community and organizations that have positioned themselves to be a blessing).  You can't imagine the impact or the imprint it has made.  When we didn't have the words, we knew we were being covered in prayer.  That's tremendous.

There is so much God has in store and stored up for us.  You know that saying 'he'll give you 'double for your trouble'...I'm ready, we're ready. We've remained hopeful throughout this entire journey and there are still processes, procedures and treatment to complete, but I'm so excited about the difference all of these things will make in our lives.  As we were leaving the hospital on clinic day, we got off the elevator and Mireya said 'hmmm it smells so good in here' (mind you we came in that same way with a mask and it was a different sensory experience), she just kept breathing in and out deeply with appreciation.  I was tickled for her. She has asked to go outside everyday since that appointment. She has reminded us on several occasions that once she gets her line out she can get in a tub 'full' of water and lay down.  One of my greatest concerns has been during Reya's play time (as normal 5-year old ) that somehow her line would get yanked out of her chest/neck while playing, jumping or by the mistep of a sibling or playmate. I know it's a gruesome thought, but a very real one for me every day. In preparation for her return to school, I've had discussions with her teacher and the Admin Team on how we could handle her recess time without making her feel penalized or sheltered.  She is very aware of it, but I've seen the school yard at recess.  Things mistakenly happen, so how amazing is it that she will have it out prior to actually going to school!  Thank you Lord...we're holding on to your promises as tightly as we've held onto your hand throughout this entire process.  Thank you for your continued prayers. I can't say it enough, there is power in prayer and everything that matters and concerns us, matters to God.

There is no rhyme or reason and some things we will never understand, but....be still and know that I am God...every good and perfect thing comes from God...there is nothing to big or to small for God and with him ALL things are possible.

Emily's On a Mission ~ We All Can Help

Meet our dear, sweet little friend Emily Hubbel.  Many of you may remember previous posts I've shared about Emily and Mireya.  The girls met on the Bone Marrow Unit last summer during their transplants.  Reya and Emily both love princesses, painting nails, and FaceTiming each other.  Being in the clinic all the time is no fun, but on days the girls are there together, illness and treatment are the last thing on their minds. They truly enjoy seeing one another and just hanging out being giggly little 5-year olds.  

Emily and Mireya are true warriors!  Emily was diagnosed in December of 2010 with Neuroblastoma, one of the most aggressive childhood cancers.  Mireya was diagnosed in the Spring of 2011 with Severe Aplastic Anemia, a syndrome of bone marrow failure affecting the creation of new blood cells.  Week in and week out they endure and undergo so much to maintain treatment plans to live and beat their respective diagnosis. 

So often we wish there was something we could do?  We all have the opportunity to do exactly that.  Emily has had so many help her, love her and support her and she wants to give back!  Emily and her family are hosting a Band-Aid drive for the Children's Hospital of Richmond's Pediatric Hemotology/Oncology Department (where Emily and Reya's receive care) and Helen DeVos Children's Hospital in Michigan.  Emily's Oncologist is located at Helen DeVos. 

#TeamBolton is asking everyone to buy a box of Band-Aids (or more) and either send them to the Hubbels or drop them off with me and I'll deliver them all to the Hubbel Family.  If you would like to participate, you can mail your Band-Aid donations to:

Hubbel Family
PO Box 5383
Midlothian, VA 23112

If you want to help with Emily's 1st Annual Band-Aid Drive, but you don't live close by and shipping is a concern, SmileMakers was very happy to offer a code, not only for free shipping, but also for 10% of all bandage purchases for this drive.  The code to use at checkout is 'MissEmily'.  This offer will be valid through 12/3/2012. 

http://www.smilemakers.com/Shop (search put Latex Free Bandages)

If you are ordering from SmileMakers or any other company that will not deliver to a PO Box please use the following address:

EMILY HUBBEL
3530 POST OFFICE RD #5383
MIDLOTHIAN, VA 23112-9998

The Hubbels would like to have all the donations in by December 3, 2012 so they may present them to the hospitals when they make their next trips. Here is the info needed for the Band-Aids:  

• any brand is fine

• latex free (since some people are allergic)

• regular sizes needed to cover when children have shots or ports accessed

 If you are interested in reading more about Emily's journey, please visit www.emilyhubbel.com or www.facebook.com/emilysjourney.  Thank you so much for helping to make this happen and please share with others.  

Best News Ever

I woke up to a very grumpy girl (a grumpapottamus), who has boycotted everything this morning except, bacon and cinnamon toast crunch.  We're having our moment of silence right now.  We'll resume our previously scheduled program of love and harmony shortly.

In the midst of all the madness, I just heard some of the best news ever....Reya's body has welcomed my boys cells back with 'Open Arms' (love Journey) and her white count increased overnight from .4 to 2.1. Her neutrophils went from 400 to over 1800.  Amazing!!! There is a possibility that we can go home by early next week. Reya is being transitioned off her IV meds to PO meds (by mouth).  We expected 4-6 weeks, but look at God!!!  The docs tried to reign in the excitement with the customary 'knock on wood' or 'recently we told a few patients to prepare to go home, and everything fell apart', but I'm banking on nothing but up from here. Thank you Lord!!

Mireya's platelet and hemoglobin counts are down.  We hope to see a rise in those numbers and avoid transfusions. We're believing Mireya's counts will continue to increase.  We're also specifically praying about GVHD (Graft vs. Host Disease), that there will be no rejection as Jalen's (SUPER) cells take up residence in Reya's body.  For now, awesome news and an excellent start to a unfolding process. Thank you for continuing to pray for the success of this transplant.

Rejoice in the Lord always, again I say Rejoice. Phillipians 4:4

The Grind

Mireya's days are filled with numerous checks and balances.  Every morning we are greeted by our Care Partner to check Reya's weight, temperature and blood pressure as well as saturation of her hemoglobin with the pulse ox.  Next up is the first round of her daily medications (Ursidol, Acylovir, Fluconozole, Tacrolimus, and Mychphenolate).  Then there's the multiple mouth flushes/washes of Nystatin, Saline and Chlorhexidine Gluconate which need to be done about four times during the day.  Radiology comes in every other day bedside for chest x-rays. The Peds Hemoc team comes in on daily rounds to conduct their examination and discuss status/plans.  Mireya's magnesium level has been low.  She's receiving rounds of magnesium to hopefully increase that level. We've fought this battle previously for a quite a while.  The rate at which her body processes and eliminates the tacrolimus affects the stability of her magnesium level. Mireya also started taking GCSF today to help boost her cells. Then we repeat the medication cycle at two more intervals in the day.

Reya has put a dent in a few boxes of Kleenex over the last day.  We believe it may be allergy related and will try Singular to see if we can get those relentless sniffles under control.  There are also the mandated daily showers and linen changes to remove and limit contact with bacteria that naturally resides on the skin.  Labs and blood cultures are done daily to monitor Mireya's counts and to identify bacteria or infection(s). Reya's bathroom visits are also monitored and measured.  We're definitely hoping to avoid C-Diff this time.

Mireya's least favorite tasks through all this medical madness is the showering and swish and swallow Nystatin.  Miss Claire (our beloved ASK grad student/partner) made Mireya a Super Star Reward Chart today to mark the completion of these tasks with none other than Princess stickers.  Every few days she'll get a small reward for doing so.  Guess who didn't gripe so much about her shower or swishing and swallowing today.  Ms. Nadra, the Hospital Teacher started working with Mireya today on several Kindergarten objectives.  They spent about 40 minutes working on Reading, Writing and Language Arts.  Reya also managed to rope her into about 10 minutes of playing with dolls.  The Nurses on the Unit have been wonderful.  On Reya's Transplant day they presented her with a awesome sign they made.  Many of the Nurses that cared for Reya last year are still here.  Those not in our rotation, have taken time to stop by, say 'hello' and give her some Princess love.

Reya has been feeling well, despite the sniffles and sneezies, but she has periods where she's very tired and drained. She woke up missing Jalen and Makinley and was super excited when they visited with her this evening.  Another day down.  Thank you Lord for your grace.

I will look to the hills from which cometh my help, my help cometh from the Lord.  He will not slumber or sleep.  He will watch over my life now and forever.  Psalms 121 (paraphrased)

One Step Closer

Apheresis Machine

Jalen was a Super Hero today.  I will remember this day forever.  Despite it all he pressed through his fear and did what only his body is designed 100% to do.  We arrived at the hospital, got registered and went to the Hemoc Clinic.  Jalen received the last GCSF injection, had his IV placed and labs drawn.  He was handsomely rewarded for being a such a trooper.

We immediately came up to the PICU (Pediatric Intensive Care Unit) to have his line placed and to begin the Apheresis process of harvesting his stem cells.  Jalen's room was filled with lots of cool things celebrating and reminding him of how awesome he is as a Super Hero Donor Brother.  Within that small window of time we were greeted and bombarded by a gang of people who wanted information, needed signatures, or wanted to revisit the procedures in detail.  It was very overwhelming and only added to Jalen's angst.  How many people can you fit in a PICU patients room?  There were approximately 12 in rotation at any given moment.

Anesthesia was able to put Jalen under within about 20 seconds.  They proceeded to hook up a few additional monitors and my boy found some combative energy, so he had to be taken up a notch.  Once he was settled and all his vitals were steady, the team placing the line started laying out and lining up their supplies.  At that point I started to question if I 'wanted' to be in the room while they inserted the line.  After a very brief discussion, I decided I would wait in the Family Lounge until the line placement was complete.  The process normally takes 15-30 minutes.  It was hard to leave him there, but I was assured as soon as it was done, I would be called before the Apheresis team started harvesting Jalen's cells.  I was told no news was good news.  I went into the Family Lounge and began to pray for both my children and their respective halves of the whole picture.  After about 40 minutes, no news definitely did not feel like good news.  I began to wonder if something was wrong.  Each time the main door to the PICU opened, I could see into Jalen's room and they were working hard.  I later found out several attempts were made to place the line in Jalen's right leg, but due to the close proximity of his artery and his vein, they were not able to get the line in successfully.  They kept getting the artery which eventually caused an enormous hematoma under the skin.  That area was bandaged and they moved to the left leg which finally was a success. 

Jalen came to and was mildly combative.  The harvesting of the cells was extremely important, so the Doctors decided to give him medicine to relax him and allow him to sleep so they could get through the process as quickly and smoothly as possible.  The Apheresis machine withdraws the blood from the body and separates it into plasma, platelets, white blood cells and red blood cells.   The stem cells are removed and the remaining components are returned to the body.  A anticoagulant medication is mixed in to prevent the blood from clotting while outside of the body and saline is given to replace the removed components.  The procedure normally takes 1.5-3 hours.  Jalen's labs showed his counts were lower than expected, so they decision was made to collect cells for an additional half hour to try to collect as much as possible.

Once the cells were collected, it would take about an hour to determine if we were successful in collecting the 4 million cells needed for Mireya's transplant.  If we were unsuccessful then Jalen would be given a double dose of the GCSF and his cells would be harvested again.  The transplant would still be conducted as scheduled, because Mireya's conditioning schedule is very specific and on the 4th day she would need to receive what cells were collected from her brother.  If it was not enough, she would receive a second transplant on the following day.  We were notified later in the evening, the apheresis of Jalen's cells did not produce the required amount of cells to complete the transplant and he would need to be re-harvested tomorrow morning.  This is not the news we wanted or expected to hear, but we will plan to repeat the process tomorrow and trust that an additional dose of the GCSF will produce what we need.
It took a considerable amount of time for Jalen to come out of the fog of all the meds he'd been given. He would have small moments of rambling and crying fits.  I was really concerned because he just could not be roused out of it.  Eventually (3.5 hours later) he started responding to questions with clarity and snapping out of it.  He hadn't eaten in over 17 hours and was very hungry, but still tired.  Shortly after that he asked for snacks and more juice and I could see he was really returning to himself.  He told me he was ready to go home, to which I replied we still have a little more work to do to complete the process and we would be able to go home tomorrow.

Mireya had a difficult night.  Severe headaches and fever plagued her through the evening. Blood cultures were taken to ensure there is no underlying infection and an antibiotic has been added to her arsenal of medications. The Medical team believes it's the ATG that is making her ill.  Mireya tolerated her last round of chemo and her ATG schedule as been drawn out to hopefully eliminate some of the issues she had last night.  So far, those modifications seem to be working.   

Having two kids in the hospital at the same time is a lot.  We're so thankful for our family and friends for all you do to make this easier for us.  Tomorrow is another big day to give and receive.  Please continue to pray for Jalen, Mireya and #TeamBolton.  Your love, encouragement, support and kind gestures are a tremendous blessing to us.  This truly is a new beginning, but we are counting down the days, weeks, months and year to total victory over this illness.  

Gearing Up

Jalen did fabulous today in clinic.  The i-port has made these last few visits a breeze and has boosted his confidence in the process and his trust in those overseeing his care.  After he received his injection, he threw his hands up in the air triumphantly as if he'd just won a Heavyweight bout and said 'tomorrow's the big day'.  He knows tomorrow will require a lot for and from him, but after that his main priority is recovering and feeling good about all he has done to help save his sister's life.

After Jalen's appointment, we visited with Mireya.  She was very excited to see us.  We arrived just in time to hear her denouncing her bathing schedule.  After some serious cajoling, I was finally able to get her bathed, all while she giggled and told me how much fun it was.  I'm hoping she remembers all the fun when it's time to do it again.  It's important that Mireya be bathed one to two times a day to eliminate bacteria that naturally resides on the skin that could lead to infection.  I also noticed Mireya had a new dressing, which means she allowed one of the Nurses to change it.  I was pleasantly surprised because she has not allowed anyone to change her dressing in over 8 months, but I welcome the break from the task.

Mireya is receiving what seems like a gazillion medications, so there are multi-pumps and lines connected to her, but overall she is managing well.  Her hemoglobin was lower today, so the Medical Team decided to give her a blood a boost with a transfusion.  She's receiving her second round of chemo and ATG today.  So far so good.  As Jalen proclaimed, tomorrow is his big day.  We have an early start and a very full day.  We're praying that Jalen's body will do what only it can do without issue and his surgeries, the harvesting of his cells and his immediate recovery will go smoothly.  Continue to keep us in your prayers.  God is working it out!

Give Me Strength

Over the course of this year I've received many messages, posts and texts about the measure of strength we've exhibited throughout this journey.  Ironically I wake up most days asking the Lord for strength because I don't 'feel' strong.  I have 'hope', and my faith tells me that God is going to see us through this.  It is not of my own will. Some days my will tells me to stay in bed, my will doesn't want to talk, my will struggles with how we are back at this place, but the will of God shows me despite how things appear or feel, we have healing and victory in him.

There are times I'm on edge and could crawl in a corner and cry as the hours go by.  My patience is worn thin and I'm angry because I look at a five year old little girl who's battling a diagnosis that wants to hold on for dear life and destroy hers. I look at how the life of everyone has been largely consumed or affected by rolling with the flow of isolation, hospital appointments and illness.  A lot of the time it doesn't feel like strength, it feels like barely holding on, but in the midst you find there is a greater strength inside to manage and cope.  You do what you have to do and more as needed.  I have a beautiful Warrior Princess that is fighting with grace. I have a valiant little guy who despite his fears will endure for his sister.  We are Mireya's advocates, overseers and caregivers. Yes we're Mommy and Daddy too (and advocate, overseer and caregiver fall under that umbrella), but there are a lot of twists and turns in managing and maximizing the medical care of someone you love.  For over 15 years, I watched my mother as this person in caring for my father, not realizing the fullness of the responsibility, nor the enormous toll it takes.

We've not really been good at asking anyone to do much for us.  It's not pride or beyond our place, we've just always handled what needs to be done by ourselves.  We're so grateful for the outpouring of love and support we've received from so many.  At times it has truly been emotionally overwhelming. I have said it several times throughout this year, I feel that every good thing I've ever done in my life is coming back to me.  It has always been my desire in life to serve, love and be a blessing to others. I believe God is showing his love for us through the hearts and love of people.

Over this last year, I've learned to be present and savor the moments I have with my husband and children.  I don't sweat the small stuff, because dealing with something of this magnitude will quickly help you put things in perspective. I take nothing for granted and when the weight of the situation feels like to much to bear, I fall on my knees and pray.  Prayer changes things. I don't know where I would be without Christ in my life. I don't know how people go through such life altering events without faith.  I truly would have lost my mind by now.  One of the hardest things is watching your child enduring it all and feeling like there is nothing you can do.  I look at my sweet girl and I would trade places with her in a heartbeat.  I continually ask for prayer because there's power in prayer and we are standing on the prayers, thoughts and love of so many.  I find my strength in knowing the day will come where I look back on this year of our lives and thank God for victory and healing for Mireya.

Many days my heart is heavy not only for my child, but for the children of the many families I've come to know and love.  God wired me that way.  It's hard for me to separate myself from the emotion I know is attached with each situation.  Continue to pray for our strength, but know there is nothing super special about #TeamBolton...if you were in the same situation, you would do all that is within your might to hold your head up and face the situation gaining knowledge, strength and power along the way.  There are dark moments, but we can't dwell in that space. It serves no great purpose. Don't get me wrong, there are many nights I've cried and it was so necessary and cleansing for my soul, I know our total happiness and joy will be returned to us.  I know God has something so incredibly great for Mireya and for us.  I also believe that in the midst of all this, he has been pleased that he could trust us to walk this out, as we've held on to his unchanging hand, with faith.  Everything within me knows this will turn out better than alright.  Our faith has increased and our spiritual muscles are growing.

Some days I laugh to keep from crying.  I try to take the higher road and recognize any measure of goodness I can find.  I've always been that type of person, choosing to see and find the good in most any situation.  This last year has allowed me to 'see' things from a grander perspective.  I have a greater appreciation for everthing and everyone in my life.  I do not understand everything, but I don't have to, God knows.  None of this took him by surprise, his word says he will complete this work and until that time, we just count it 'mostly' joy...yes I deviate from the 'all' because it's not 'all' joy, but we find joy in knowing who we serve and his desire for our lives and our family's life.  Never leaving us, never forsaking us and our faith is increased and many around us have made a choice to see and look at things differently.  I don't know any other way to be, but prayerful, hopeful and thankful.  In him I live, move and have my being.  My happiness and satisfaction is not tied up in Aplastic Anemia and all that it has brought into our lives since last year.  My happiness come from waking up everyday alive to face another day not knowing what the day will bring, but knowing whatever it is God is able and he gives me the strength and capacity to face it.

Thank you for your prayers, your messages and encouragement.  It lifts us up.  When we're feeling low, we look around and know it could be worse and we thank God for the 'better' days that are to come.  The battle is not yours, its the Lords and he's got it.  Don't give up, don't give in, because in the end, we win.  Love conquers all and the greatest love and sacrifice of all is God's love for us.  He knows our hearts, our hurts and how much we can bear.  He bore it all and desires for us to have total victory.  We're keeping our eye on the prize and trusting that it won't be long before we taking that victory lap.

July 6th

New Birthday Celebration - 1 year ago

Today marks the One Year Anniversary of Mireya's bone marrow transplant.  Her 'new' birthday medically speaking.  Celebrating this day is bittersweet as we are preparing to repeat the transplant process in a few weeks.  Despite it all, we are reminded of how great God is in allowing us to see 'this' day.  Whether it's as we planned or not, we have hope and have surpassed yet another rung on the ladder of overcoming this illness.

Our expected timeline for the transplant has been delayed a little as we await insurance approvals and the scheduling of procedures for Jalen and Mireya. Mireya's count are holding pretty well.  Her platelets are borderline for a transfusion and her hemoglobin is actually lower than expected, even though she received a transfusion last week.  For now we'll monitor her closely and hopefully be able to hold off until our appointment next week for transfusions.

Please say a special prayer for Mireya, she has become a bit resistant about going to clinic.   It took a lot to get her full cooperation this morning and she decided to let everyone near the corner of 11th and Marshall know all about her waning desire to be an active participant in the process.  I stood amongst the gasps and stares wanting to shed my own tears...instead I scooped her up, hugged her tight and let her howl at the sun, all while trying to beat the countdown to the "Do Not Walk' sign.  It's tough, but when the going get's tough, the tough get on their knees, pray and keep it moving.  We don't have time to dwell in sorrow.  It doesn't feel good, especially when there is nothing you can do as a parent to change the situation.  We continue to hold on with faith.  Regardless of what we see, and how it feels, God is working it out.  He blessed us with a son that is a perfect match for his sister and although timing and medicine have seemingly fallen through, God is with us every step of the way and we are working our way to victory.

Psalms 91:1-2  Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the Lord, "He is my refuge and my fortress, my God in whom I trust."

Second Time Around

This weeks appointment was a tough one.  We've been holding out for Mireya's body to make a turn around, but an additional chimerism test and the downward trending of her counts show her graft is failing. We were hoping to avoid a second transplant, but the next step is the DLI (Donor Lymphocyte Infusion) or Boost transplant.  We are exactly 6 days away from what is medically considered Mireya's ''new birthday', when she received her bone marrow transplant last year.  It's a hard pill to swallow because up until a few months ago we were having incredible success. The blessing is we still have our Super Hero, Big Brother Donor Jalen.

Please, please, please pray for Jalen.  He has spent many days questioning if his sister is going to be alright. He is extremely anxious at the thought of having to go through another medical procedure to help Mireya.  The DLI will require more for Jalen than the original transplant.  Jalen has a great disdain for needles.  I don't know many people who aren't disturbed to some degree when having someone insert a needle in their body.  Jalen had a bad medical experience after running into a pole when he was 5.  He ended up needing several stitches about an inch below his eye.  He was afraid and very uncooperative.  He ended up being papoosed (basically wrapped up like a mummy) and restrained by two grown men as they closed up the gash.  He cried, I cried and that experience alone gives him great anxiety in medical settings.  Going to the dentist for a simple checkup has caused him to hyperventilate when just having his teeth counted.  Sedation is going to be key in making this less traumatic for him.  He was sedated prior to the transplant and did exceptionally well.  We're doing our best to help calm his fears.  We'll be working with the Psychology division of the clinic for some positive reinforcement and creative angles to assist us too.  My boy is long and lean, but he is bull strong.  Couple that with anxiety and adrenaline and it won't be cute if we're not able to calm and relax him prior to these events. 
 
Jalen will have to take the same growth hormone (GCSF) as his sister to help build his cell counts in preparation for the boost.  His cells will be accessed via his blood as opposed to his bone marrow.  The team will have to determine when Jalen's cells are at their peak and the procedure for harvesting his cells will take place.  The GCSF and determining the peak time to harvest his cells will be done via injections and by drawing labs...in other words needles.  Harvesting his cells will require a port to be placed in his chest so that his blood can be accessed for several hours as needed.  The goal is to collect about 10 million cells.  Additional cells will be collected and frozen should we need them in the future.  Jalen will  have to be hospitalized for this part of the process.  The port will be removed prayerfully the same day, provided everything goes as planned.

We met with the Transplant Coordinator who was one of the Nurses we had on the Bone Marrow Unit last year.  It was good to see and work with a familiar face as we walked through the preliminary steps of the transplant procedure.  Mireya will receive chemo, but it will not be as extensive as last year.  Our stay on the Bone Marrow Unit will hopefully only be about ten days or so.  We are believing it will not take long for Mireya's body to show success based on its familiarity with Jalen's cells.  We found a similar case of a young lady diagnosed with Severe Aplastic Anemia.  She was taken off her medications about the same time frame as Mireya and had a late graft failure following an otherwise successful transplant.  She received a DLI and it took about 4 weeks to see the success of the transplant.  She has not had any issues since receiving the boost.

There is a greater risk of Graft vs. Host Disease (GVHD) following this type of transplant.  We had no issues with GVHD during our first transplant, and we are truly believing and asking for prayers that we will not have any issues or signs of GVHD this time.  We're praying for a swift engraftment and successful and harmonious results. Mireya will be immune suppressed, so we'll have to deal with another '100 days' and isolation.  The DLI may not be handled as strictly, but it will also not be addressed lackadaisically either. We'll have to take it a day, a week, and a month at a time to see and monitor Mireya's progress.  Mireya has definitely been looking forward to going to school.  This timing will likely affect her ability to do so. The hard rule is no school for one year post transplant.  Children's Hospital has a great home bound program and we'll be working with the Educational Specialist to ensure Mireya is on track as needed.

We've decided to handle Jalen and Mireya's procedures separately.  He will be hospitalized for his procedure where we both can be there to support and love him through it. We didn't have this choice during the bone marrow transplant.  Both had to be done at the same time, so I was not able to be with Jalen as he went through this last year, and Quentin wasn't able to be with Mireya because he had to take Jalen home and care for him. Once the harvesting is complete, Mireya will be hospitalized for the transplant.  We are about two weeks out from starting this process.  Although we've been down this road before and have a pretty good idea of what to expect, there are many variables involved.  Thank you for your prayers, encouragement and support.  It helps to lift our spirits and it fills our hearts with gladness to be covered in prayer and surrounded by so much love.  We are trusting God for victory for our sweet girl and praying for peace and comfort for Jalen in times where he is troubled.  God answers prayers and will continue to show himself mighty through it all.

We're Back

Our appointment this week was disappointing. Reya is on the line for receiving platelets and a blood transfusion.  The decision was made to hold off on any transfusions, largely based on the possibility of needing to repeat the transplant via the boost.  The preference is to limit or avoid giving Mireya any blood products that could cause an issue with the success of a second transplant.

Based on how Mireya's counts have been trending, the boost is our next viable option.  I've been praying to avoid this for both Jalen and Mireya, but we are not seeing the expected increase in her counts as hoped.  It's possible we need to give her body time, but in the grand scheme, we don't have a large window of time to work with.  We cannot allow her to languish here in a cycle of low counts, transfusions and uncertainty.  It's still very baffling to find ourselves back at one after so many months of exceptional success, but we're so thankful to have Jalen, despite how terrified he is of being his sister's donor again.

We received a call this afternoon from our Medical Team to return to the hospital after lab results showed Mireya has tested positive for an infection in her blood.  The infection has been identified as a Staph infection.  Additional test have been conducted to determine if it is MRSA.  Staph and MRSA are both very heavy hitting infections that can be life-threatening.  MRSA specifically is contracted from contact with someone that already has the infection or has cared for someone with the infection.  It is important to identify which infection it is, so a specific antibiotic can be prescribed.  Reya is currently taking a heavy hitting medication that covers a multitude of infections, but MRSA specifically is resistant to multiple antibiotics.  Her counts are also down another notch, but we'll still hold off on transfusions at least for tonight.  Mireya is doing well.  She does not have a fever, which is good.  Her hemoglobin is low, so she doesn't have the same energy she had a few weeks ago, but overall she is doing well.  A weakened immune system trying to fight off major illness is very taxing to the body, so please pray for strength and the ability to quickly recover.

The weeks have not gotten any easier and the highs and lows are absolutely draining. Everyday I pray for strength and wisdom as we oversee Mireya's care. She is our Warrior Princess and we stand alongside her suited up and ready for whatever comes our way.   We serve the ultimate Overseer who we know is able to turn this around in an instant.  The realization of how close we are to repeating this transplant has consumed me, but I've been reminded that victory 'will' come either way...turned around or going through. Keep us lifted as we wait out the testing here at the hospital and as decisions are made in the coming week about the transplant.  Nothing is impossible with or for God and ALL things work together for the good to those that love the Lord.  Loving and continuing to trust him through it all. 

Home on the Range

Three & 1 @ Hospital

Mireya was discharged from the hosptial this weekend.  The bacteria growing on her culture was identified as a type of influenza that has not been commonly seen in about five to ten years.  We were sent home with a heavy hitting antibiotic that will have to be administered via her line for the next ten days.  Mireya's counts are borderline for platelets and a blood transfusion, but the decision was made to wait and see what her body is able to do before our appointment this week.  If anything changes with her physically we'll need to come back to the hospital before our scheduled appointment.  It was a long week, but we are happy to be home recuperating.

We will likely revisit discussions of repeating the transplant via the boost. We're still believing God to avoid having to go that route.  We all recognize her body is fighting this sudden illness and as a result her counts are all over the place.  Continue to lift us up, we're praying for swift recovery and increased counts.  Even in the midst of the madness, God is present and working it out.

Deuteronomy 3:16  Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.

Challenging Week

Mireya was not feeling her best earlier this week.  Her energy level was low and all she wanted to do was rest. I took her temperature and it was at 99.3.  Not high enough for major concern, but something to keep an eye on.  I made a few decisions over the last week, allowing Mireya to participate in some group based activities. I want to believe she didn't pick up anything as a result.   Regret and guilt all wrapped in one...sounds a bit harsh, but the last time I 'decided' to let Mireya do something similar, we were presented with fever and a hospital stay.  Isolation really is no fun and over the last few months with the highs and lows of her counts, I've been so cautious about what we do and where we do it.  It's hard, but times like these I wish we could just live in the bubble, protecting her from all the things that 'could' potentially wreck havoc on her body, but that is not reality.  Some things I can control, others I cannot.  My name is Venus Bolton and I have a daughter that is immune suppressed and fighting to get well. Is there a club for this?  Yes, it's called LIFE...ok enough sarcasim and self-doubt. 

Later in the day, Mireya started complaining and crying because her head and stomach were hurting.  When I checked her temperature, it was up a bit 100.2 just below the threshold that would require us to go to hospital. I called Hemoc to make them aware of what was going on.  The Nursing staff was going to speak with the Docs and let me know if she should come in.  They called back within about 15 minutes and her fever had risen to 101.3.  There was no question at that point, we needed to pack a bag and head down to the ER.   I gave her a dose of Tylenol and posted a quick message on our Facebook page and Community Group to solicit prayers as we journeyed down the road.

When we arrived, we went through the cursory regimen.  Counts, checks, IV fluids and medical history and happenings.  When Mireya's temperature was taken, she did not have a fever. That fever was no match for the power of prayer and the practical/physical application of good ole' Tylenol.  A winning combination of spiritual and physical/practical applications working together for the good (trust me Tylenol has never reacted so quickly to a high fever on its own). Her counts came back really low, which was very disappointing after last weeks increase.  She would need platelets, but the additional test did not show anything of concern and we were scheduled to be discharged. The attending Nurse checked Reya's temperature before we left and it was 102, which concerned me.  I pushed the issue and challenged the call, but we were still discharged.  The general census amongst the staff was we should be covered overnight since we received the IV antibiotic and had an appointment in clinic the following morning. I didn't necessarily agree but after 6 hours of sitting in limbo, going home was a welcome option and we would deal with whatever else came in the morning.

Mireya's fever persisted overnight and she also began to have tremors as the fever spiked.  She had a low grade fever when we arrived at clinic but it quickly increased 101.8 shortly thereafter.  Reya's medical team was concerned particularly with the presence of tremors.  Tremors can be associated with infection.  There was also question as to why she was released the night before? Mireya needed a platelet transfusion, but we would have to wait until her fever subsided because one of the signs of problems during transfusion is an elevated temperature.  It would be difficult to determine if Reya was having a reaction or issue due to the transfusion because of her fever.  So we waited for the fever to go down and then administered the platelets without issue.  The decision was made to have Mireya admitted so she could be monitored more closely.

Day 3 and Mireya is doing better.  Weight loss has been a concern, but her appetite and energy level have started to return. The Nutritional Specialist visited with us and has added some additional snack options to help boost her weight.  A strain of bacteria was found in her bloodwork yesterday, as a result she was placed on a more powerful antibiotic. Reya's fever has diminished, but we want to watch the progression of the bacteria on her lab to determine if she will need IV or oral meds when she is able to go home.  We are hoping that will be tomorrow.  Reya's counts continue to be suspect, but some of that is to be expected as her body fights through this infection.  The hospital Pharmacy administered Tacrilimus to Mireya the first day we were here and the level was not very high.  We brought our capsule based Tac to the hosptial for Pharmacy clearance and approval and after just one dose of that prescription, her Tac level was up to 10.  That theory remains intact.  We'll wait out the day and hope Mireya continues to progress without issue so we can go home.

Child Life (we love Child Life), the staff, along with the Hospital's Education Program and ASK Outreach have been so wonderful to us.  The activities, resources and familiar faces truly make our time here more enjoyable and bearable.  Seeing Mireya's smile return has been priceless.  Thank you for your thoughts, prayers and messages/posts of love. It is truly uplifting.  Words will never express our gratitude and how much we appreciate your support and encouragement.  We are thankful to have loving, caring and thoughtful friends/family cheering us on and praying us through.  God Bless you all!

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

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. 

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.

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

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.