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.    

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

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.

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)