Throw Your Hands Up

I Will Watch Over and Protect Her

From the Beginning We've Been Side by Side

We're raising the roof AND praising God! Reya's counts were through the raised roof today.  The white count doubled.  Her platelets and hemoglobin also increased.  Controlled freedom is in sight.  Last night Mireya asked me if she could go home?  She's tired of being in the hospital, but also thinks some of these cool things in her hospital room will look great in her room at home.  Last year when Mireya started to speak 'out of her mouth' about going home, she was able to do so within days. We're hoping that will be the case this time too.

I found a throwback picture of Jalen and Mireya as little ones, in their camo gear looking like they are ready for battle.  Little did we know how telling this photo would be.  Fighting with and for one another through love....for life and continued togetherness.  God knows all things.  Thank you Lord for Jalen.  There are so many still awaiting donor matches.  You gave us perfection in an all eight marker match blessing.  We endured four losses before being blessed with this precious boy and two additional losses between him and Mireya.  The enemy was coming hard for the seed.  It's not going down without a fight, but guess what, the battle is not ours, it's the Lords.  We do our part and he does his.  Mireya's name means 'miracle' in Spanish.  God knew not only would we be walking it out, but she truly is our miracle.  Life and Victory will continue to follow.

Nothing is too difficult for God. Everything we stand in need of, he will provide.  Trusting is not always easy, but hold on to your faith and keep believing.  It's an emotional rollercoaster.  It very hard to watch your child endure a illness that threatens to claim their life.  I mean seriously it's hard to watch your child injure themselves where you weren't able to prevent it from happening, or fix it. Dealing with something you have no control over can make you feel helpless.  We're human beings, it is natural for us to respond to things through our emotions...but God! There comes a time in the midst of trials and adversity that you have to confess God is in control, and has the power and ability to work it out and see you through.  Worry, stress and anxiety will destroy your peace.  Is it always peaceful? No, things change from day to day, but I remind the Lord that I'm depending on him, I'm trusting him and I need him to help us through this.  The only thing I can stand on is his promises.

Deuteronomy 30:6 And the Lord thy God will circumcise thine heart, and the heart of thy seed, to love the Lord thy God with all thine heart, and with all thy soul, that thou mayest live. (KJV)

Hebrews 2:13 And again He says, My trust and assured reliance and confident hope shall be fixed in Him. And yet again, Here I am, I and the children whom God has given Me. (Amplified Bible)

Ups, Downs & Changes

Look Mom...No Lines

Three Amigos

Mireya's counts have been through a series of highs and lows over the last few days.  We saw high numbers over the weekend that were seemly to good to be true so early, but the team is not concerned.  Mireya is right where they expect her to be.  Several significant days of baseline counts will allow us to revisit going home.  Reya's appetite and spirits remain good.  She has been taken off of all IV meds and even had some time disconnected from the pole and pump.  She was so happy she twirled and danced all around the room.  Just that sliver of freedom brought a huge smile to her face.

Changes have been made to Mireya's antibiotic medication.  The team believes the fluctuation and decrease in her white counts is due to the co-processor antibiotic she was taking.  She's been given a round of the new antibiotic and we're waiting to see if this change makes a difference in her counts. Reya is still receiving GCSF to help boost her cell counts.

This afternoon, I ran into the lady who doles out the 'deluxe cut' to patients on the floor.  Last year I saved Mireya the agony of watching her braids fall out one by one (literally).  This time, we'd decided 'if' Reya's hair started to come out, she would have to 'see' it coming out and realize it 'needed' to be cut.  She reminds me often and holds me personally responsible for 'letting that lady' cut her hair.  We're happy Mireya's hair has remained intact through this round of chemo.  I believe if we get through this week, we'll likely avoid this as an issue.

We're continuing to trust God to do what only he can.  Thank you for your prayers, thoughts and love.  God is moving and all is well.

It is well with my soul...you are the rock on which i stand, by your grace it is well, my hope is sure in Christ my Savior...it is well with my soul (Hillsong)

Still Tracking

Mireya's counts took a small dip, but are still in the process of stabilizing.  Over the last several months, Reya's white count has fluctuated anywhere between 1.5-4.6.  Having her on the board at 1.5 at this point is promising.  Her neutrophil count remains above 1000 which is awesome.  Neutrophils are the cells that fight infection.  Reya's neutrophil count has not been above 800 since about January, so we are very excited about where she is right now.  We're still on track to possibly be released early next week.  We'll have a better idea after receiving her labs results tonight.  It seems to be happening so quick, but we believe her body's familiarity with Jalen Wonder Boy Bolton's cells is definitely a factor.  Jalen and Makinley miss Reya being home and they definitely miss Mommy and Daddy when either of us is away at the hospital for extended days.  We banked on approximately 6 weeks of Splitsville, but are really looking forward to being back together at home as a family unit. The same parameters and precautions would apply at home, so to manage Reya's care there would really be nice.  Once we're discharged, whenever that is, we'll still be in clinic 3-4 times a week for monitoring and follow-up. 

Reya had a nosebleed today.  It wasn't excessive, but with low platelets you worry about bleeding and the body's inability to clot successfully.  Her hemoglobin was also low, as a result she received blood and platelet transfusions.  She's had a few out of the ordinary symptoms with the last two platelet transfusions, so the Medical Team decided to pre-medicate her to help diminish any issues. Overall Mireya continues to do well.  Her appetite is still hit or miss, unless it's bacon or specifically something prepared from home.  She is the self-proclaimed 'Bacon Princess', eating about 6-7 pieces each morning.  The group Social Worker was joking that every time she comes to the floor it smells like bacon.  The Galley staff member told me the majority of the patients on the Unit also love and request bacon, likely due to the saltiness. Mireya is definitely craving salty...tonight she asked for club crackers, saltine crackers and pretzels.  We won't put a lot of stock in the request or stock up on those items, because it could all change by tomorrow morning.  Chemotherapy has that affect on the taste buds. 

We're trusting the Lord in every area of this process and believing for steady increase.  Prayers are going up all over the world on Mireya's behalf.  God hears every prayer, and continues to assure us he is present and working it out. 

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)

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.