Friday, August 31, 2012

Scholastic Endeavors

Yesterday was Orientation for Jalen and Mireya. We've been on the fence about how to approach and proceed with plans for Mireya and school.  She is definitely ready, but we want to do what is best for her considering treatment, isolation and the possibility of her not being able to join her class until early next year.  We consulted several key people (doctors, specialists, educators and trusted friends/family) about thoughts and options to make this a doable, but also pleasantly memorable time for Mireya.  I have to admit, we received great feedback, but also divided stances.  Homebound, Homeschool, Hold Off?  I chuckled to myself about Homeschooling.  Not because I don't believe I can do it, I totally could...but I was immediately surrounded in Homeschooling 'good vibes' because of the many conversations I've had with Homeschooling friends.  A few of those chats seriously had me on the brink of considering the option (shout out to my Homeschooling Mommy Friends).  I just don't know that I'd want to add the responsibility of homeschooling to the responsibility of managing Reya's medical care and schedule. 

As I left for the Kindergarten Orientation, Mireya was fast asleep in her hospital bed.  I wish she could have been there to meet her classmates and experience the buzz and excitement.  I visited with her teacher and took pictures and videos of her classroom.  Mireya's teacher also made a video greeting for her, which Reya thought was really special.  I met with the Educational team earlier this week to discuss plans for Mireya, ways to keep her connected to the class and the process of transitioning her into the physical school setting. This is something we'll monitor and take a day at a time.  Nothing is set in stone and it all can be changed as needed.  It's not your traditional start to school, but we're thankful for the resources available for Mireya's journey and success this year. 

Jalen's orientation was in the afternoon.  He enjoyed meeting his teacher, seeing old friends and new classmates.  In just a few days, three of the four will be classified as 'in school'.  In the midst of all that has been going on, we were able to coordinate getting our college girl back to school.  She had to go back a little earlier for training as an RA. We are very excited and proud of her.  Makinley will participate in a preschool program to keep her thriving and socializing (she's just that kind of girl). Keep us in your prayers as we embark upon a new school year with the expectation of maintaining health, sanity and the excitement for learning.    

Wednesday, August 29, 2012

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)

Tuesday, August 28, 2012

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

Sunday, August 26, 2012

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. 

Friday, August 24, 2012

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

Thursday, August 23, 2012

Fun Filled Days

Mireya's had a full day of activities and fun. The Art Teacher, Ms. Gretchen came by, she and Reya painted several pictures and made all sorts of things with playdough.  Ms. Fran, from Connors Heroes stopped by to check on Jalen's status and visit with Reya.  She also bought Mireya the movie Enchanted, which we really enjoyed watching.  The Music Teacher stopped by earlier this week to see if she could visit with Mireya today and sing Princess songs.  Mireya had so much fun playing the guitar and the Q Chord.  She learned to play Mary Had A Little Lamb and Twinkle, Twinkle Little Star all by herself.  Friends are in town and stopped by for a quick visit.  Mireya is seeing a lot of new faces, but it's always great to see old, familiar faces you know and love.  Ms. Nadra, the Hospital Teacher also visited with us today. She and Mireya had fun playing a host of engaging educational games on the Ipad. We had a quick call from Jalen and Makinley on Facetime, and now Mireya is back to playing her new games. We LOVE and are so grateful for our I-gadgets.  They've really been helpful in keeping us connected and Reya occupied.

Medically speaking, Mireya's throat continues to be an issue.  An analgesic mouth rinse has been added to her medications to help with the discomfort.  Mucositis is a common culprit associated with chemotherapy that affects the mouth, mucous membranes and the digestive tract. Mireya's stomach has also been bothering her.  We're praying over Mireya's desire and ability to eat because we had issues with Mucositis last year and it resulted in her being put on TPN for nourishment purposes and because of concerns with her weight.  Reya's magnesium level continues to linger.  They've added oral magnesium, in addition to the IV Mag, to see if we can boost her magnesium level.  It has been a super busy day, but Mireya enjoyed every minute of it. We're so appreciative of the organizations, programs, and the resources extended and made available to us.  Seeing her in good spirits with a smile on her face, brings me tremendous joy.

Wednesday, August 22, 2012

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)

Tuesday, August 21, 2012

Praying and Waiting

Jalen and Mireya are doing well respectively.  The bandages on Jalen's legs have been removed.  He is very sore, but is making the necessary adjustments and getting around well. Mireya is at Day +4 since the transplant.  The Medical Team is pleased overall with where she is.  She has a pretty good case of the sniffles and the sneezies.  They are giving her a couple of antibiotics to eliminate any lurking or underlying infections, but nothing has shown up on her cultures.  Reya has also developed a few sores in her throat from the chemo and grudgingly takes her Nystatin.  She definitely liked taking it better when she could swish it around and spit it out.  Due to sores and the tenderness in her throat she now has to swish and swallow.  She says it tastes horrible, and Daddy concurs.  I'm going to trust him and his tastebuds on that one.

Reya is a little sluggish, it's evident that the chemo is really giving her a small run for the money, but she's still holding on and overall is in good spirits.  She has not been pleased with the hospital food.  She's requested a lot of her favorite things from 'home'.  A few days ago it was pancakes, last night it was spinach and her favorite cookies with frosting and sprinkles.  At 10pm she wanted a hot dog, but pulling that off in the middle of the night was a tall order.  So we opted for Chick-Fil-A.  The Unit has a pretty neat setup with the Chick-Fil-A.  The patients can get Chick-Fil-A brought up for lunch/dinner or if they happen to be hungry at 10:00 at night.  The nurse went down and picked up some freshly cooked Chick-Fil-A for Reya, but the few bites of chicken nuggets and fries, were no match for the two bowls of spinach and the two frosted cookies she chose to eat from home. 

Thank you for continuing to align your thoughts and prayers with ours.  We're praying and waiting.  Praying that Mireya's body is playing nice with Jalen's Wonder Boy Bolton's cells and in a few days we'll see evidence of this sweet reunion.  God is working it out and EVERYTHING is working together for our good. 

Saturday, August 18, 2012

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. 

Thursday, August 16, 2012

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.  

Wednesday, August 15, 2012

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!

Tuesday, August 14, 2012

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. 

Tuesday, August 7, 2012

Moving Forward

This is our last week of controlled freedom.  We've been at the hospital about four times a week doing scans, exams and prep work for Jalen and Mireya.  Mireya will be admitted to the hospital next week to begin her chemo therapy and conditioning regimen.  Jalen will also begin his conditioning regimen.  He will be admitted later in the week and the transplant will occur at the end of the week.

Jalen first big appointment was a challenge.  I'd done a trial run with his relaxing medicine and it totally took him beyond relaxed.  He was dizzy, unsteady, walking into things and it made him sick.  After talking to our pediatrician I decided to dial it back when I gave it to him for his lab appointment. Unfortunately that dosing had little affect on relaxing him.  Tom David, the Chaplain and Tim, the Transplant Coordinator came to offer support and encouragement for Jalen.  They did not leave our side until we were done a few hours later.  Jalen was in good spirits and did great throughout the appointment until he saw the technician preparing the twenty plus vials for his bloodwork.  He began to weep and softly said he didn't want to do it and asked if I would do it instead. *tears*  I would do it in a heart beat if I could.  Midway through the process, both of Jalen's veins gave out and we had to seize/make an opportunity to get it done.  He was extremely brave but between nerves, anxiety and tears it took a lot of coaxing and eventually brute force to complete the task. 

Over the last week, plans have been revisited and modified.  Up until this point, it was believed Mireya's graft was failing.  Another series of tests show Mireya's body actively fighting my boys cells, and as a result we will not be doing a boost, but repeating the full transplant process.  We had also planned to handle their procedures separately.  However, in our full scale meeting with the Medical Team, the discussion and point was made that Mireya receiving 'fresh' cells is the preference.  To eliminate all doubt we're going with the 'preferred' method.  It will take some major juggling but we will work it out so that they are doing treatment simutaneously.

It has become necessary for Mireya to receive both blood and platelet transfusions more frequently over the last few weeks.  It's very disconcerting, but the cells are not lasting for any great length in her body.  We are definitely at the place of needing to get this done quickly.  Reya's patience and willingness to be an 'active participant' with the process continues to dwindle.  Understandably so, but it is another layer in the balancing act that has to be handled with great care. Her feelings matter, even though she has no real words for them.  

We received a call that one of Jalen's lab results came back elevated and it needed to be determined if he could 'still' be the donor? Um excuse me he is the donor...he is all we have.  The real issue is making sure it is still safe for him to be a donor right now.  Those labs and tests would have to be repeated and compared to the original results.  In preparation for this appointment, I bumped his medication up a notch.  We had a time of prayer and by the time we arrived, he was in the zone.  The staff 'got the memo' on all things that could go down and prepared to put him in a room to contain him (with reinforcements).  I told them I thought he would be okay having the labs drawn in the open Fishbowl area and our Nurse was open to trying that first.  I set up the Xbox and Jalen played for a little while so the numbing cream could start working.  When he was approached by our Nurse to draw the labs, there was a little resistance, but I held his wayward hand, counted to three and the needle was in.  I was so proud of Jalen and he was super excited too.  I'm hoping this gives him a greater confidence in his ability to get through the consecutive days of injections and labs. 

This week we have visits for counts and consults for Jalen and Mireya.  Our last free week before were on lock down for for six weeks in the hospital, then isolation for several months at home.  Thank you so much for continuing to pray for us.  Everything we stand in need of, the Lord will provide. Peace, Strength, Provision, Cellular Compatibility, Recovery, Success and Victory!  Thank you Lord for helping to eliminate the pressure and range of emotions we feel.  Thank you for lifting us when we're low.  Thank you for providing for us and making a way.  We thank you these cells will co-habit in peace and allow the miraculous to unfold.  Thank you for orchestrating healing and working out every aspect of this process in Mireya's body.  All things are working together for our good and NOTHING is impossible with or for God!