Round & Round

The world of counts, labs, cells and test is ever evolving. Mireya's counts have been good, her chimerism ratios are getting tricky, but we're still believing and trusting God.  It was noted in our last appointment that Mireya's skin 'appeared' to be dry and her lips seem to be in a revolving state of chapped and cracked.  I've seen cases of both chronic and acute GVHD and the natural instinct is to saturate the skin in every moisturizing and protective lotion and potion available, but the dryness and chapping associated with GVHD is not remedied by simply applying lotions or cremes. Fortunately, there's a low percentage of GVHD in sibling donor cases, but these occurrences have our Medical Team concerned about Graft vs. Host Disease.  We are continuing to confess the word over Mireya's body and against GVHD.  We know that dry skin and cracked/chapped lips are also common side affects of chemotherapy.  It's definitely something to keep an eye on and it remains on the top of our prayer list. We're thankful Mireya's counts are increasing and holding steady.  We choose to place our focus on the positive progress. Everything that concerns us, concerns God and he's working it out despite how it 'appears' or the 'implied' negative that rolls across the radar.   

Shifting the Atmosphere

Doing Homework in Clinic

Mireya has had a couple of really good appointments.  Her counts are fluctuating between good and very impressive.  She's been placed on a schedule to wean her off the immunosuppresion meds.  This has us a little concerned because it seems so early.  It wasn't until after she was taken of her Tac earlier this year that we began to see the rapid decline in her counts.  With the GSCF we see her counts soar across the board and recently without the GSCF, her counts are holding in a good place.  Our Medical Team is approaching this weaning process very cautiously. The biggest concern is graft failure or Graft vs. Host Disease (GVHD). With this new train of thought, we realize having her on immunosupression meds for the longer duration may have hindered her early on as opposed to help her because the suppression meds not only suppressed her cells but also suppressed Jalen's.  When she was taken off completely, Jalen's remaining cells were decimated by hers.  We're hoping as we dial back the suppression meds that Jalen's will continue to have a foothold and flourish without opposition.  It appears to be working because the last two chimerism tests showed a decrease in Reya's cells.  Thank you Lord!

Reya continues to enjoy her afternoon classes with her teacher.  I met with the school this week to put an IEP in place for Mireya.  That is a very involved process.  Fortunately that document can be amended and modified as needed, but I'm happy with what we have in place.  Mrs. Saum introduced the "Monkey" to Mireya's class along with some pictures of Reya.  The class sent her a really awesome picture in return.  Mireya was so happy to see all her future friends and classmates holding and huddled around her Monkey.  She giggled with excitement. #priceless

We're very thankful for Mireya's progress over the last week.  Thank you for your continued thoughts and prayers.  We believe our praise, prayers and worship have created a shift in the atmosphere and everything we stand in need of, God will provide.

Full Days

Today was a big day.  Mireya had clinic, which was full of shifts and turns, but today was also her first day of school with her teacher.  Clinic we won't spend to much time on, we'll just give it to the Lord and continue to trust him to work it out.  A second chimerism test showed a significant jump in the presence of Mireya's cells which has us all concerned. As a result, Reya was taken off of one of her immunosuppresive medications.  She has been taking two and it is likely those meds are also suppressing Jalen's cells.  Reya was given GCSF today to see if we can boost her counts.  Her white count took a surprising dip to 1.8 (ugh).  That pesky cough has also intensified.  We are scheduled to have a chest scan done at our next appointment. Infections can crush your white count.  Take in consideration a white count that is already significantly low, add illness and the outcome is a severely taxed system that can collapse at any moment. Prayerfully the GCSF makes a difference. A additional chimerism test was ordered to see if dialing back the suppresion medication over the last week has made any difference in the ratio of cells.  Another concern with eliminating the suppression medication is the increased chances of GVHD.  Again, we're giving it to the Lord and believing he will work it out.

Mireya was super excited to start Homebound with her teacher, Ms. Saum.  They worked on several projects, read books, drew pictures for a book the class is working on and talked about the Constitution.  Jalen's class is also working on the constitution. Mireya thought it was cool 'she' was working on something Jalen was also learning about in his class.  Ms. Saum told the class she would be seeing Mireya after school.  They were all very excited and inquisitive about the classmate they have yet to see or meet.  One of the projects Mireya worked on was a "Me" drawing.  Her "Me' drawing was so cute. She drew a picture of her dancing.  It almost looked like she was floating in air. The part that tickled me the most is she highlighted the 'fabulous' shoes she drew in picture.  I'm glad Ms. Saum will be able to share Mireya's work in class so her classmates will get a sense of who she is...my little dancer with impeccable fashion sense.

Mireya is scheduled to received one hour of instruction each day (this can be altered, as needed).  After a long day in clinic, it was apparent toward the end of the hour, Mireya was tiring of the process.  Overall, Day 1 was a huge success.  I'll have to find something really fun and special to do with Makinley during Mireya's Homebound sessions, because she was having a bit of a struggle with not being 'included' in the lesson plan.  Ms. Saum will also be introducing the class to "The Monkey" this week.  We're so thankful Mireya can receive instruction and participate in school through this program until her health improves.  We're looking forward to sharing a favorable report after our next appointment this week.  Continued prayers as we toe the line and keep the pace.

When you pass through the waters, I will be with you, and through the rivers, they will not overwhelm you.  When you walk through the fire, you will not be burned or scorched, nor will the flame kindle upon you.  Isaiah 43:2

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