Higher Higher

Over the last few weeks, Reya has been putting out the best counts we've seen in over a year!  We're still remaining very watchful over delicate skin issues, but overall Mireya is tracking well. She had her first pentamadine treatment since the summer today.  She was not thrilled, but she managed to get through it quickly.  It was a long and tedious day in clinic, but we're thrilled to have such a positive response happening.  Chimerism testing shows a slight decrease in Mireya's cells count, which is very favorable.  We trust that everything we've been standing on to for over 18 months will continue to come to pass.  Healing and victory over Aplastic Anemia!

I can't believe the first nine weeks of school is almost over.  Jalen is making it happen and we're so happy about Mireya's Homebound instruction.  It's really wonderful for her to have this time daily to focus on learning.  Some days she's for it, other days she's less cooperative, but she is doing extremely well.  

Isolation continues to be a struggle. The children don't always understand why certain things are not an option for us right now, but we do our best to keep them engaged and keep it moving.  Isolation won't last forever (even if it feels like it) and brighter days without restrictions are definitely in our future.  Can hardly wait......thank you for continuing to pray for and with us.

We're on the Move

Mireya had a great week!  She's feeling good, looking good and her counts are great.  We had our first series of PAL testing in school and she did amazingly.  We're really pleased to have a full week of great labs.  Next week we'll determine where we are with chimerism.  The days are ticking away to Day 100.  We're definitely looking forward to maneuvering out of isolation.  We're on the move in the right direction. Thank you Lord for the increase in Reya's counts and for continuing to strengthen her body.

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

Holding Steady

I Heart Bacon

We had favorable appointment to round out the week.  Reya's counts are holding steady.  We didn't have to receive GCSF and one of her immunosuppressant medications was dialed back.  Hopefully it will allow us to see what her body can do with less suppression in place.  The chimerism results showed a combination of cells, but Wonder Boy Jalen's were most prevalent.  This is an excellent sign.

Mireya is having a difficult time sleeping at night.  It's not uncommon to find her awake singing or wandering around in the wee hours of the morning.  This super night owl schedule causes her to be extremely tired throughout the day. We had this problem post transplant last year too. We're not certain if any of her meds are specifically creating an issue, but we'll bring it up when we're in clinic next week.  Reya's appetite is also a bit quirky. You never know how chemotherapy will affect the taste buds. Her all-time favs this week are hot dogs, bacon, frozen pancakes and butter crackers.  Reya has asked for these butter crackers as an appetizer, side dish and snack. At this rate, I may have to buy stock in Eggo, Oscar Meyer and Keebler.

Mireya is very happy to be home, she tell me at random points throughout the day how happy she is to be in her house, in her bed and with her family all together. Thank you so much for your continued prayers.  Please say an extra prayer for Mireya and her ability to rest at night. 

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