If At First You Don't Succeed

One of Our Favorite People Stopped By

try, try again.  Day 2 of Apheresis started off with a bit of uncertainty.  There was concern because Jalen's white cell count dropped significantly from the day before.  Although the white count was low, another cell marker almost doubled, which was very positive.  The decision was made to proceed with harvesting Jalen a second time and if necessary a third time to get what was needed for Mireya.  Regardless of what was harvested the second time, Mireya was scheduled for the transplant later in the day.  A second transplant would be coordinated for the following day with the additional cells collected. Jalen was in favorable spirits.  Since the lines and IV were already in place, it was simply a matter of connecting him to the Apheresis machine and starting the harvesting/collection of his cells. Within the hour, it was apparent Jalen needed something to allow him to relax and/or rest to complete the process.

Jalen is very inquisitive, he needs to know specifically what is going on at all times and why.  What I observed is, even though things have been explained to Jalen, he is still waiting for the unknown to occur.  As a result he was very restless.  The excessive movement caused the machine to stop on more than one occasion.  I asked the Doctors if they could give him something to help him calm down so the harvesting could be completed in a timely manner.  The medication took effect and Jalen's  disposition changed to agitated and argumentative.  He started talking very roughly and without care.  I then asked if they would give him something to allow him to sleep.  Within minutes he was asleep and the process was well on its way. Three hours later, and the harvesting was complete.   We now had to wait and hope we got what we needed.  Within an hour, the Head of Pediatric Hemoc came in to tell me we got more than we needed.  They collected over 7 million cells in that sitting for a total of over 9 million cells.  Thank you Lord!  Jalen needed the additonal day on the GCSF for his levels to peak.  Enough cells were collected from Jalen for two full transplants or one transplant and two boosts.  Amazing!  Those additional cells will be stored off-site and available in the event they are needed again. We're believing that will never be the case for us.  

Jalen will need to eat lots of foods rich in folic acid and receive iron supplementation twice a day for about 3 months. His hemoglobin took quite a hit during this process too.  He will need to take it slow for a few weeks, but Jalen is otherwise healthy and we expect his body to replenish those cells soon.  The PICU team had hoped to remove all of Jalens lines (i-port, iv and the line from his leg) while he was still asleep or at least coming out of his rest.  It didn't quite work out that way, they were about 15 minutes shy of a more peaceable situation, but we were finally able to get it done.

Jalen had to be monitored for another four hours before he could be discharged.  We would not be able to see Mireya before her transplant.  A second transplant day is not necessary because all the cells were assembled and given during the scheduled transplant.  Quentin and I were communicating from opposite ends of the hospital, keeping one another abreast of what was going on with both of the children.  Reya had been given a medication in preparation for the transplant that altered her otherwise sweet disposition and had her bouncing off the walls, ceiling and floors.  By the time Jalen was discharged, it was late and the transplant was complete.  Mireya was visibly tired (bouncing off the walls for several hours will do that to you).  We were all exhausted.  Jalen and I didn't go to bed until about 3am, because he spent the majority of the night hallucinating about glittery things floating in the air, spiders on the walls and some sort of little black things squirreling around in the clock.  Drug side effects are no joke.  Quentin and I quickly said our good byes with hopes that everyone would settle down for a good night's rest without issues or incident.

I'm extremely proud of Jalen for all he has endured to help preserve his sister's life.  He can't fully grasp the magnitude of what it all means, but he knows he's done a good thing for his sister.  Last night he wept, telling me how much he loved his sister(s) and how he never wanted her to be sick again.  The totality of his emotions seemed to surface at that time, it was truly a heart wrenching moment. 

The next few weeks are critical in this process.  For now we wait.  We wait for Mireya's body to accept the cells (the love and the prayers behind them) and for engraftment to occur and her counts to increase. We appreciate the prayers, posts, calls and messages.  Continue to pray over this process and for Jalen and Mireya as their bodies recover, heal and spring forth new life. 

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!

Let's Get It Started

Jalen started his conditioning regimen to increase his cell counts in preparation for their debut later this week.  He's scheduled to received these injections daily until Thursday.  The Medical Team believes Jalen has Gilbert Syndrome (prounounced jeelbear).  Gilbert is a mild liver disorder that affects the break down of red cells in the body.  As a precaution, he will need to be monitored very closely during this transplant process.  Stress and anxiety are common factors in elevated bilirubin levels with Gilbert.  We fully understood the extent of Jalen's alarm and worry over having to be his sister's donor again.  We expressed our concerns and loosely suggested Jalen have some sort of contraption available that would allow him to inhale nitrous oxide or some sort of relaxing solution as needed.  It probably sounded crazy and over the top to them at the time, but after having Jalen retested and the level still being double where it was a year ago, we're having discussions about putting things in place to help eliminate his level of stress and worry.  Included in our arsenal of relaxing medicine, breathing exercises and numbing cream, we have now added freezing spray (basically the artic freeze for shot locations), an i-port (subcutaneous to eliminate multiple sticks) and the Anesthesia Team is on tap as needed.  The insuflon catheter (i-port) is awesome.  Having it placed, was not without opposition or tears (mine and his), but it made administering his injections today a breeze.  From zero to done in twenty seconds.  Go Jalen!  I love my boy and I'm so proud of him.

Today marks the beginning of the process.  Mireya's chemotherapy has started.  My heart is heavy.  It's difficult to leave the hospital and live your family life in this mode of separation.  It's already been a pretty long day and we're back at it tomorrow.  Continue to keep us lifted.  Special thanks to Lisa, Fran and the volunteers of Connors Heroes for pulling off the unimaginable....another amazing room for my Princess. Simply beautiful! Mireya LOVED it.  Makinley and Jalen also appreciate how you (as always) included them. Quentin and I also love the 'Parent Pack'. Thank you for making our space on the Unit feel like a lovely place to be, despite our days ahead.  You are a blessing to us and in the lives of so many children and families. 

Mission of Love ~ Revealed

A little over a week ago, the hearts of many rose to an occasion coordinated by a dear friend for #TeamBolton.  Below is the excerpt from her posting and my original blog post about our Super Hero Big Brother Donor Gift.
*************************************************************I started this Chip In fundraiser for two very special children: 5yo Mireya and 7yo Jalen. Many of you know the story already. Mireya was diagnosed with Severe Aplastic Anemia and last year her Super Hero Big Bro Jalen (@ 6 years old!), who was discovered to be a perfect donor match, was her a bone marrow donor. However, the transplant needs a boost, so within the next two weeks Jalen will have to be a donor once again for his sister. He has extreme anxiety about the medical procedure but knows he has to do this to help his sister. Since he has given the gift of life to his sister, it seem only fitting that he get a gift too. (My goodness, this is SOOO deserving of a reward!) All he wants is an Ipad, which we, along with his parents, are hopeful will excite him enough to ease some of his anxiety. Mireya will also be able to use this gift during her many hours in the clinic. If your heart moves you to help please click on the link below. Any little bit helps and will be a blessing to the Bolton Family. Any additional funds raised will go towards the family's medical expenses.

In less than 8 hours we raised enough for an Ipad and a few weeks of copays.  As a family we decided the Ipad would be the better choice in the long run, but a very special family knew in his heart of hearts, Jalen wanted an Ipod Touch.  With a disclaimer that it be given 'from Mommy and Daddy', they purchased the Itouch for him. Words cannot convey how much of a blessing this is to and for us.  The greater gift is seeing how a community of people (many we don't know personally), can come together to make a difference in the lives of someone else.  Over the weekend, I joined my Co-ordinator Extraordinaire and crew at the Apple Store to purchase the goodies for the kids. It was so exciting.

Jalen had his first appointment this week and he's feeling good about his Super Donor status and the things we're putting in place to support him.  Jalen's treatment will begin next week (injections, labs and assessments) followed by his hospitalization.  Our Warrior Princess will be in clinic tomorrow for at least three hours to receive a blood transfusion.  We decided to present them with their gifts tonight, and you will see they were very excited and thankful.  My Co-ordinator Extraordinaire suggested it might be a good idea to get Makinley something small so she felt included.  My feelings were that Makinley would be fine.  She had a moment, but within minutes her natural reaction and tears were turned into smiles.  About 30 minutes into playing with his Ipod Touch, Jalen asked me to please tell the friends that got these things for he and his sisters, that 'i love them'.   

Little Occupied Hands

Thank you so much for your kindess and generosity!  This is a unforgettable blessing in our journey.

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."

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. 

The Heart of The Children

So much has transpired in the last few months.  The love and support of many is still so amazing.  Over this 11 month period, Mireya has been an exemplary patient and a true fighter.  She presses through with a resilience and a flow that is beyond words.  We try not to place a lot of emphasis or focus on her illness.  We do what needs to be done, have our checks and balances and keep it moving.  God is working it out and we're pressing toward the mark of victory over this diagnosis.

Mireya was 3 years old when this all began, about 4 weeks before her 4th birthday, and a brand new 4 when she was diagnosed.  She has been a trooper.  There is a lot about this journey she does not have 'words' for which has presented itself at times as what I'll describe as melt downs.  Something very different from a tantrum.  It's apparent in those moments, she is overwhelmed with her emotions.  For all she has gone through, I think she is entitled to a few breakdowns.   I've certainly had my share throughout this ordeal.  Please pray for Mireya's emotional well being and the ability to continue to do all that is asked of her as we work our way to better.

As Mireya gets older she is more 'aware' of things and has been more vocal about things upsetting to her. We had not realized how sensitive she's gotten about her hair until a recent melt down involving her sister. I took Makinley's hair down as I prepared to wash it.  Mireya's hair is growing back beautifully, but when you have a three-year old sister with hair down her back sashaying around you just might have a moment.  Anyone remember those 'You Just Might Be' books, a lot of those points were hilarious.  This not so much. It struck Mireya like a freight train.  She started crying and sobbing that she wanted her hair back.  She wanted long hair.  It broke my heart.  She asked me why I had her hair cut.  I sucked back the tears and explained to her that one of the medications she took last year made her hair start to come out and we made a decision to cut it so we didn't have to watch it fall out. That was a hard day, but I'm glad we did it that way.

We've never made a big deal of Mireya's hair.  She's gotten into wearing hats, which I could never get her to do before.  We've tried a few neat things with her hair as it grows, which she's liked.  We have cool hair accessories, but deep down in her heart, she misses and wants her hair.  That is a very real emotion.  It's just not one she has voiced until now.  I tried the whole your hair is still longer than Mommy's (enter the Family Feud strike gong) that does not work anymore, because Mommy just keeps cutting hers every month or so.  It hurt to hear and see. We are believing Reya will attend school this Fall.  It's definitely different going from a program with other kids in treatment that look like you to the big wide world of public school.  Keep this in your prayers. We hope highlighting individuality and her uniqueness will reinforce how she feels about herself as opposed to focusing on hair.

Summer has always been a time for us to to enjoy water activities.  It's something we've obviously had to curtail due to Mireya's Hickman Catheter.  Mireya asked me last night if she could have a pool party when she got her line removed.  Again my heart sank at the innocence of the question and the huge milestone she realizes it is.  I told her she would 'absolutely' have a pool party when her line is taken out. The first of many parties and celebrations.  So we definitely have that to look forward to.

My Super Hero boy/brother Jalen has also been walking around with a heavy heart.  When his sister went into the hospital, he was worried if she didn't get better that he was going to have to 'do something' again.  Jalen and I talked at a base level about his having to 'do something' and he began to get physically uneasy just speaking about the possibility of being his sister's donor again. Since then, we've broached the subject with Jalen very gingerly. There is no need to discuss something that is merely a 'maybe', but also Jalen is the kind of child who would be consumed by reliving in his words what was 'a good thing for his sister and her life, but he didn't have a choice about doing it".  Jalen did great during the transplant process, but how a child processes events varies and obviously can be a frightening place.  A transplant via the boost would require more this time and it is likely we will only share with Jalen what we deem necessary when we have to.  I don't want him internalizing what appears to be a concern for him through his own deducution of information.  Bless his heart.  

The one thing Jalen has wanted or asked for over the last year is an Ipod Touch or an Ipad.  I was surprised to see that several of his classmates had an Ipod Touch.  He has asked a billion times about the possibility of him getting an Ipod Touch or an Ipad.  I told him maybe he could get one for Christmas, but that it was a really big gift for little boy, but just maybe.  I still happily live in the world of the Blackberry, but after investigating the Ipod Touch as opposed to the Ipad, I'm inclined to go a few hundred more for the Ipad.  It just seems to make more sense because it would be a gift that they all could use.  I am making a confession....IF Jalen has to go through being a donor a second time, I'm going to do all I can to have an Ipad in his possession as he recuperates.  The gift he is giving his sister is priceless and I will do what I can to make that happen.  I'm proud of him.  Even in his fear, he knows what he is doing is helping his sisiter's life and even if he feels he doesn't have a choice he knows it's a very good thing.  So if your in the know or have a connect, that is definitely my hearts desire for him should we have to repeat this process.

I've spent a few nights mulling over these conversations and instances with both Jalen and Reya, all of it filling my eyes with tears and my heart with sadness, but I will delight in the day that Reya's hair has grown out and she can take a bath with more than a few inches of water or she can jump in a pool.  Well I'll be delighted, but with a different appreciation for doing two little curly heads.  I will relish the moments where she is free of all issues and Jalen can relax without rotating a thought in the back of his mind about being a donor for his sister.  If he happens to be downloading an app on his new Ipad, more power to you big brother, you more than deserve it!

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

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

Back to School

Jalen started school this week.  School was closed several days due to the hurricane.  Classroom notifications literally came out the day before orientation last week.  It was fun to message, text and check Facebook to see whose child was assigned to what teacher.  Jalen only ended up with two former classmates, both he liked a lot and had the chance to spend time with over the summer.  I couldn't believe not one little girl from last year is in his class.  He was sad that his favorite two girls would not be with him this year.  I'll miss their sweet faces and beautiful personalities too this year, but we now have 21 new friends to make this year.  I've heard nothing but great things about Jalen's teacher and we enjoyed meeting her last week.

We had the opportunity to communicate about Mireya's health and our concerns with illness and hand washing in class and just hoping she would help us out as best she could.  Both she and the principal were fabulous.  They had a brief sit down with the school nurse and formulated a letter to the parent's in Jalen's class about the importance of hand washing and kids staying home if/when they are sick, especially the risks due to Mireya's suppressed immune system.  Jalen was not named in the letter, but parents were informed of a 'classmates' situation and the importance of maintaining as healthy a environment as possible so the sibling's health and progress would not be compromised.  Kudos to the Teacher, Principal and Nurse for understanding how important this is for us and taking that extra step to ensure parent's were also aware.  Knowledge and awareness is half the battle.

This is always that week of getting back into the groove and resistance.  The girls want to get on the bus and Jalen wants to stay home because he thinks the girls are at home having more fun than he is.   Overall we've had a great week and we're looking forward to an awesome school year.